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/

 

 

To the Warrior Parents

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You get tired of the fight, don’t you? The constant that is our lives. For all the articles written about how special needs parents should make time and care for themselves, you’d think the world would realize that these are luxuries we special needs parents often cannot afford. We are set to the tumultuous beat of the world’s drum that dictates a never-ending battle for our children. And if we skip a beat, it feels as if the system is poised so that everything you’ve worked so hard to put in place for your child comes tumbling down; then we must start over again. Fighting. Pushing. Trying. Praying. It is not a fight for the “extra” in life, for privilege or preference. On the contrary, we are in a fight for our child’s basic needs: equal education, the ability to communicate, medical equipment, health coverage, to become functioning members of society, and on and on the list goes.

To the warrior parents who have children with special needs… Don’t allow the fight to consume you. Lamentations 3:22-23 says, “Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.” The fight can be exhausting can’t it? The battle of the mind is as real as the physical battles we special needs parents face day to day. Discouragement sets in. We begin to wonder if anyone else cares about these giants we daily face on behalf of our children, who are oftentimes unable to fight for themselves. In the midst of it all, dear parents, do not forget that God sees you and that “his compassions never fail.” Great is His faithfulness to never leave us. When we find ourselves overwhelmed from the fight, we must fix our eye on Jesus.

To the warrior parents who have children with special needs… Don’t lose your fight. There is a careful balance we must find between ensuring our child is given every opportunity to reach their greatest potential (whatever level that may be), and just being so battle weary that we allow the fight to overtake us. Psalm 127:3 says, “Children are a heritage from the Lord, offspring are a reward from him.” Parents, do not forget that our children are a reward from God, entrusted to us. In our weakest, most exasperated moments, we must remember this and continue to persevere in making a way for them. I know how easy it is to become worn. Don’t give up. Fill out the paperwork for the one hundredth time, reapply for services again, meet with the teacher, ask the questions, and speak up for the child who has no voice. Our children are worth it; they are our greatest treasures.

To the warrior parents who have children with special needs… Don’t lose your hope. As a parent of a child who has special needs, we must have a double dose of hope; hope enough for ourselves and hope enough for our children. In a world where “awareness” is lacking in action and our children may seem to be falling through the cracks, a hope big enough to sustain can only be found in Jesus Christ. Psalm 121 says, “I lift my eyes to the mountains- where does my help come from? My help comes from the Lord, the Maker of heaven and earth.” Parents, lift your weary heads and set your sights on Jesus. He is where our strength comes from as we daily fight to make a place for our children. He is the maker of heaven and earth and is fully able to see us through – to give us hope for ourselves, hope for our children, and hope for the future. Even more, he loves us and our children with a love far greater than we could ever comprehend. We can trust Him.

First posted by my partners at Joni and Friends and Irresistible Church

http://irresistiblechurch.org/warrior-parents/

Sharing Jesus With My Autistic Son

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How do you share the Gospel with someone who has a disability? How do you know if they understand? What strategies should be used? These questions can overwhelm or intimidate people. For those considering starting a special needs ministry at their church, it can seem like a daunting task. 

I understand. For many, this is uncharted territory. It was uncharted territory for me too until the Lord blessed us with our son, Ezra, who has severe autism. Just like many of you, my greatest desire is for my children to know the Lord. Ezra was no exception. 

As the parent of a child who has a disability, I have found three simple rules of thumb to keep in mind as I share Jesus with my child. 

1. Don’t Discriminate: 

The Gospel is for everyone. We should never elevate ourselves to the position of being able to discern who the Holy Spirit can or cannot reach. Because God’s love and the story of His Son is for everyone, we should share it with all people regardless of background, color, ability, or disability. 

We try to attend church even when it’s hard. We do not hide our son away with the misconception that church is not for him. It’s possible that the church may not learn to accept or minister to those with a disability until those with a disability join their ranks. As parents, we sometimes need to have thick skin so the petty comments or misunderstanding others have for our disabled son don’t get in our way of finding a place for him in the church. We love the church. We believe our son needs the church, and the church needs him. He is a part of the Body of Christ. 

2. Don’t Overcomplicate: 

Our mostly nonverbal son loves music. The lyrics to one of his favorite songs go like this: “You want me. Somehow you want me. The King of Heaven wants me.” He may not be able to clearly sing every word, but he knows this part by heart. With bright eyes and a wide smile, he sings of how the King of Heaven wants him, and it seems to resonate deep within him. Simple truths of God’s love and desire for his children is not lost on my son. 

Many times we overcomplicate the Gospel; we have this plan, that book, this diagram, that program. We overcomplicate and try to overcompensate. However, the Gospel of Christ is simple: Through Jesus, God offers forgiveness and unconditional love. Simple truths of the Bible are used by the Holy Spirit to crack wide the hardest of hearts as He calls out to the souls of the deeply broken. God’s Word does not escape the understanding of the disabled. 

3. Don’t Underestimate: 

One of the greatest mistakes we could ever make is to underestimate a person’s ability to comprehend the Gospel which is equal to that of underestimating the ability of the Holy Spirit to work in someone’s heart and mind. 

Every day our son amazes us with his demonstration of comprehension and the information he retains. It may look different from you and I, but those who have a disability understand so much more than they are often given credit for. 

So every day we share. We share with our son that Jesus loves him. We let him know that God has a perfect plan and purpose for his life. We share simple truths covered in love, and we trust that God will allow these truths to seep deep into the heart of our child. I believe without a doubt that God is bigger than any disability and His Word is all powerful. 

How unfortunate would it be to miss out on the incredible opportunity to share Christ with my child because I underestimated his cognitive ability and even more, the ability of the Holy Spirit to reach all people? 

So dear parent, dear church leader, dear family member longing to touch the life of someone who has a disability, don’t give up! Continue to share the good news of Jesus Christ. You never know the true impact you might be making in the heart and life of a person who has a disability. If you won’t tell them, who will?

First published by my partners at Joni and Friends and Irresistible Church

http://irresistiblechurch.org/sharing-jesus-autistic-son/

 Ezra loves for me to read to him the Plan of Salvation each Sunday at Church!

Ezra loves for me to read to him the Plan of Salvation each Sunday at Church!

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!

When Comparison Kills Contentment

Comparison. We all struggle with it. And how could we not? Flashing before our eyes every day on social media are pictures of everyone’s best moment, best self, and best “story.” We know these images are momentary and do not always represent real-life, and yet we somehow permit them to seep into the crevasses of our heart and allow them to make us feel as though our lives just don’t quite measure up. None of us are exempt from the pitfall of comparison. 

We compare occupations, vehicles, vacations, and schools. We compare our accomplishments and the accomplishments of our children. We see a picture of Susie and Bob, and based on this one picture we assume that they must have the greatest marriage on earth. Perhaps we are even tempted to wonder what we could to differently to gain what they have. We compare our homes. We compare our clothes. We compare our bank accounts (or at least what we think might be in someone else’s). And really, there is no end to this game of comparison. 

I am no stranger to this snare. I willingly admit to you that as the parent of a child who has special needs, I sometimes allow comparison to creep into my heart. I see other children, the same age as my son, laughing and playing with one another, and my heart breaks for my little boy who is unable to do the same. I see families frequent restaurants with ease and go on elaborate vacations while our special needs family struggles to venture into public some days. And even though it’s been our choice and honor to trade a fancy home or other luxuries for the ability to provide our child with the therapies and special services he needs, I sometimes find myself comparing our “stuff” with the “stuff” of others. As a special needs parent, there is no quicker way to lose hope and lose heart than to begin the game of comparison. 

Comparison is the silent killer of joy and contentment. 

When we find ourselves sinking in the quicksand of comparison, we must quickly begin working to dig ourselves out before being overcome. 

First, we must remember that “our struggle is not against flesh and blood” (Eph. 6:12, NIV). Satan is actively seeking to steal our joy. The enemy loves to kill our contentment by keeping us busy comparing rather than counting the many blessings God has placed in our lives. Make no mistake, if Satan can keep you focused on the muddy waters of comparison then he knows you will have little time to realize the provision of grace that God has so wonderfully blessed you with. 

Second, we must find beauty in the life God has given to us. There is no perfection here. We are all so beautifully broken, and each of us are fighting our own private battles. If we traded our life for another, we would only find a new set of struggles and joys, hopes and hardships. Let’s not forget that God has specifically designed each of us with purpose. Why would we ever compare our life to someone else’s when their life is void of the unique purpose God intended specifically for us? God knows the plans he has for you. They are plans “to give you hope and a future” (Jeremiah 29:11, NIV). Let us never be so preoccupied with the lives of others that we miss out on the hope and future God intends for us! 

Dear friends, comparison kills contentment. Don’t let the enemy rob you of your joy and your purpose. Let us each press on in our God-given purpose, throw off the shackles of comparison, and cheer each other on as we pursue the hope and future God has gifted us!

First Published by my partners at Joni and Friends and Irresistible Church

http://irresistiblechurch.org/comparison-kills-contentment/

 Ezra and I at church! It doesn't look the same as everyone else, but he loves to go to church to see his friends, sing along with the music, and hear about Jesus...and look at that happy face!

Ezra and I at church! It doesn't look the same as everyone else, but he loves to go to church to see his friends, sing along with the music, and hear about Jesus...and look at that happy face!

A New Year and a New Thing!

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Do you dare to trust that God is going to do a new thing in 2018? Now is the time of year when everyone makes resolutions, new promises, and sets their expectations on the future. But what about us? What about the parents of a special needs child? Many times, we grow stagnant in our hope that God might have new and exciting things planned for our child with special needs. The world beats us down, and we find ourselves barely crawling into the new year. Our day-to-day life can be so tedious that somehow, we miss the reality that God wants to do a new thing in our lives and in the life of our special needs child as well. Dear parent, do not lose your hope. 

Trust that God Can Reveal a New Thing: Our God is a God who pursues a relationship with His people. He so desires a personal relationship with us and wants us to experience His power in our lives. He wants us to allow His Holy Spirit to fall fresh on us and for us to grow in our knowledge of Him. Our special needs children are not excluded from Gods desire to meet with His children. Let us pray and trust that God will pursue the heart of our child and will reveal Himself in ways that only He can. 

Trust that God Will Allow New Things: Sometimes, we grow weary in our never-ending attempt to help our special needs child achieve new things. The extremely exhausting road of fighting for your child’s needs and trying to find those who just might give your child a chance can leave you feeling very lonely. This year, let’s commit to not losing hope. Let’s keep pushing, keep trying, keep cheering, and keep believing that God will allow new strengths to be developed. 

Trust that God Wants a New Thing: Our God is not a past-tense God. He is ever present and always working. As you begin a new year, trust that God wants to use you and your special needs child in new ways. It’s time to be transparent—help others to understand this journey you’re on. It’s time to be daring—do not become so overwhelmed by the limitations the world has placed on your child that you give up. It’s time to press on—set new goals for yourself and your child. Many special needs parents feel so bogged down by the “can’t” that we lose sight of the “could.” Please don’t quit, let’s believe that God can do a new thing in the life of our children. 

As you look forward to this new year, I pray you find peace in knowing that God can make “a way in the wilderness and streams in the wasteland.” No situation is without hope. No child escapes His view. No disability is too great. He sees each of us in our struggles and declares that He can do a new thing! 

“See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:19 (NIV)

First Published by my partners at Joni and Friends and Irresistible Church http://irresistiblechurch.org/new-year-new-thing/

Keep My Running Shoes On

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I love to walk around my house barefoot. I like the feeling of soft carpet on my toes and feel more “at home” without the restriction of wearing shoes. But more and more it seems that I forgo this comfort for the functionality of keeping my running shoes on.

You see, our home is different than many people’s homes. Because our son has autism, our home is louder; he is always singing, making noises, or quoting movies (in the world of autism it’s called “scripting”). Our house is in interesting order; you will find trains lined up on the kitchen table and strategically placed books open to strategically chosen pages. Currently our back door is always open. Our son loves to run outside and play, but it is also his current belief that the back door should remain open at all times—even if he is playing in a different part of the house. Living in this world of autism has caused our home to be a sometimes chaotic, but always beautiful haven for our family. And for now, living in the world of autism has caused me to keep my running shoes on.

For many, running and autism go hand in hand. People who are “on the spectrum” are often runners. Our kiddo is no exception to this pattern. Although he frequently overcomes his urge to run, our son’s current impulsivity requires me to jump up and move quickly at any moment. I have to be ready, so I keep my running shoes on.  

I love how the Lord uses my son’s autism to gently sharpen me in my personal relationship with Him. The Lord has recently reminded me that just as I have to keep my running shoes on, the same applies in my walk with the Lord. I need to keep my spiritual running shoes on.

In 1 Peter 3:15, the Bible reminds us to sanctify our hearts and “always be ready to give a defense to everyone who asks you a reason for the hope that is in you…” We need to keep our spiritual running shoes on! It is easy for us to slip our shoes off and run our toes through the carpet of comfortability in life, but that is not the calling of Christians. Life was never meant to be about our comfort, but rather exalting our Creator.

It’s my prayer that people around me will be able to see that my hope is in Christ. May I be quick to help and show love to others. May I be a reflection of Christ in all that I say and do. I pray that I am sharp and “ready to run” this great race called life. Sometimes it’s easy to let our spiritual shoelaces come untied. We become comfortable Christians, and it’s easy for us to get tripped up. I am thankful the Lord can use my precious son to remind me that I need to lace up my spiritual running shoes and be prepared for this sometimes chaotic, but always beautiful life. So, what condition are your running shoes in?

1 Peter 3: 15 (NKJV)— “But sanctify the Lord God in your hearts, and always be ready to give a defense to everyone who asks you a reason for the hope that is in you…”

First Published for my Partners at Irresistible Church

 http://irresistiblechurch.org/keep-running-shoes/

 

 

 

What the World Does Not Yet Know...

There are things the world does not yet know about you, but we do… 

We know the joyful heart you have; how you love to smile and make others smile. Jokes are not lost on you, you are fully aware and very capable of sly humor in your own way. Your belly-laughs and wide grins are gracious blessings on this journey of autism. One day the world will understand that children who have autism feel deeply too. 

We know you have unique intelligence. We watch you absorb every detail of life through hungry eyes of exploration. We find it incredible that you play trains in your room to the movie script on the TV three rooms away; you hear everything. We are baffled by the fact that you can listen to a song once and match the melody and pitch perfectly. You seem to memorize people by their smell. You can read a heart from a mile away; you know if someone wants to be around you or has to be around you. And quite frankly, you don’t have time for the naysayers. You know roads and routes, and you are quick to let us know if the upcoming destination is pleasing to you. You are detail oriented in every way, and you are so aware of the conversations, noises, and activities going on around you. One day the world will recognize that children with autism have an incredibly and uniquely wired intelligence. 

We know your behavior is communication. Contrary to many people’s beliefs, behavior “for no reason” does not exist when it comes to you. We watch the battle rage inside of you between impulse and control; it’s so visibly real. And we have learned that every, tiny impulse has a cause. It is our prayer that one day you will be able to explain with your own words what you think and feel, but until then, we must listen to your actions. What if the world began to look at behavior as more than just a problem or discipline issue? What if we began asking WHY? If every behavior was considered to be a conversation, perhaps we could look past ourselves and help unlock the mystery of what you are so desperately trying to communicate. When the world begins to understand this significant key, true acceptance might become possible. 

We know that purpose does not pass over you. We believe that God has a very special plan and purpose for each and every individual. Just because you have been given the worldly label of “autistic,” does not mean that God’s purpose has passed over you. Therefore, we will press on. We will continue to help make a way for you and try to give voice to your life and who you are. With every trial and triumph, we will hold true to this belief. There is nothing wasted in your struggles and nothing wasted in your victories. You are perfectly made. When the world also begins to assign purpose to children living with autism, there just might be a chance of a cultural heart change. 

“Jesus answered, ‘It was not that this man sinned, or his parents, but that the works of God might be displayed in him.’”—John 9:3

First Published at IrresistibleChurch.org  

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When it All Goes Wrong

I know your heart, dear parent of a special needs child. I know how it feels when it all goes wrong. I understand those moments that make you hit your knees to plead with the Lord on behalf of your child. I know the cry of the parent who feels they have tried it all and yet frantically searches for anything that might provide a new breakthrough.

I’ve been there when it all goes wrong. When this year’s obstacle was last year’s victory.  When one step forward seems to make everything else take three steps back. You find yourself scrambling to hold it together. We want to fix it, try this, and try that. We collect our tired bodies and heave ourselves into bed just to try it all over again tomorrow—cleaning up the brokenness when it all goes wrong.

Dear parent of a special needs child, we can find ourselves on a slippery slope, you and I. Dark moments can lead to discouragement and despair. There are two things we must establish in our hearts and minds early so that when it all goes wrong, we stay strong.

1 Flaws today do not determine failure in the future.

As my son struggled to the ground in an aggressive meltdown, my heart sank. In that moment, I was consumed with worry for his future. My head began to spin with all the what ifs. We often believe the lie that our child’s rough moment equals a rough day, that his rough day means he had a rough week, and one rough week ruins our entire month. We fret about the future as we evaluate the flaws. When it all goes wrong, one moment turns into an eternity. When it all goes wrong, we must pick ourselves up and remember that this was just one moment. We must press on. We must spur our children on and help them overcome. We must remind ourselves that God holds the future of our children in His sovereign hands, and we need to trust Him with that. Flaws today do not determine failure in the future, instead they cause us to readjust and trust.

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

2.God’s got a bigger plan than you.

When everything goes wrong, it’s easy to try and grasp at ways to get a handle on things; to control them. It seems reasonable that if I just try hard enough, challenge my child to overcome, search for all the best “ways,” that we should end up as one of those success stories you hear about on the news. But what if God is writing our stories differently than what we expected? What if His blessings lie in the burdens? What if the story He has planned for you looks much more like unconditional love than any success story on the news? We must be willing to accept His perfect plan, even when everything seems to be going wrong. We must be willing to trust God with the pages of our lives. Even in our weakest moments, God is not taken by surprise nor is His sovereign plan shaken.

“‘For my thoughts are not your thoughts, neither are your ways my ways,’ declares the Lord. ‘As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.’”  Isaiah 55:8-9 (NIV)

I know your heart dear parent, do not be discouraged. Even when it all goes wrong and everything seems to be falling to pieces, the Lord is holding everything in place. He is the one in control of the future, and His plan is bigger than ours. And because I know your heart, I know you probably need that reminder as much as I do.

First Published for my partners at Joni & Friends and Irresistible Church  http://irresistiblechurch.org/goes-wrong/

 Some days are just meant for play. No cleaning, no working, no demands. Just breathe deep. Breathe in the closeness. Savior the small things. After it all goes wrong, playing trains for a day is exactly where we need to be. 

Some days are just meant for play. No cleaning, no working, no demands. Just breathe deep. Breathe in the closeness. Savior the small things. After it all goes wrong, playing trains for a day is exactly where we need to be. 

The Smile in My Pocket: Special Needs Siblings

“Nichole, do you need the smile in my pocket?” As a little girl, my momma would offer me her “extra” smile when I was feeling sad. I had forgotten she used to say this until just the other day, as we all eventually turn into a version of our parents, I looked at my own daughter’s downcast face and offered, “Grace, do you need the smile in my pocket?” It was without thought that these words tumbled out of my mouth, and I couldn’t help but smile at the realization of what I had just said. But my little girl was not smiling. Not even close. 

It was not a look of discontentment or boredom that covered her face. There was no trace of selfishness. Instead, it was a look of deep sorrow—an emotion that flooded her heart and reflected in her eyes. I knew this look. I had seen it before. 

My sweet girl buried her face in her hands and wept. She wept for her baby brother. She was burdened for him as the new school year approached. She prayed that he would make new friends and that his teachers would love him; because it’s hard watching her baby brother try to find acceptance in a world where autism is still very misunderstood. 

This was the cry of a special needs sibling. 

We know that parents of special needs children sometimes need extra support and encouragement, but we often forget that special needs siblings also daily give of themselves, their time, attention, and love. They need support and encouragement too. 

Here are just a few things we have learned from our precious daughter. 

Special Needs Siblings Feel Deeply

Special needs siblings are exposed at a very early age to the lack of understanding our society has for people with disabilities; many times, they feel responsible to make a way for their sibling. Special needs siblings want so much to have a connection with their brother or sister; toys, movie preference, and activities take a backseat to the possible opportunity of simply winning a glance, a smile, or even a touch from them. Just as my husband and I sit and pour out our hearts to one another about the future and well-being of our special needs son, our daughter also loves her baby brother and is concerned for him, praying desperately for him to succeed. We should always keep in mind the deep heart aches of a special needs sibling. 

Special Needs Siblings Sacrifice Greatly

Therapy sessions, doctor appointments, procedures, and tests ... this is the life of a special needs family. We try to remind our daughter that she doesn’t have to be the doctor, the therapist, or the teacher. “Just be his big sister” we say as she prompts her baby brother with verbal cues before she will allow him to have another pretzel bite. Disability becomes a family affair. Our homes are not like everyone else’s. Our lives have a unique ebb and flow. In the midst of all this, we desperately try to make special time for our daughter. Time that is only for her. Because many special needs siblings, by nature, give of themselves relentlessly. 

Special Needs Siblings Need Encouragement

If you know a child who is a special needs sibling, please encourage them. They carry burdens heavier than many their age. They have also acquired beautiful gifts that take many of us a lifetime to learn. They recognize that love requires no words. They know the significance of being a friend to all people regardless of ability. They have learned to find the beauty in life amidst the struggle. They have learned to choose relationship over possessions. It’s true that special needs siblings carry a perspective of life that is weighty at times and yet equally as beautiful. The weight of these gifts should be matched by as much encouragement as we can give. 

Special needs siblings feel deeply, sacrifice greatly, and need our encouragement. Maybe you could offer them the smile in your pocket?

First Published at Irresistible Church

 http://irresistiblechurch.org/smile-pocket-special-needs-siblings/

 

 First Day of School

First Day of School

Parenting with Grace

I have a confession to make. I parent with a tremendous amount of grace. Not in a “oh-look-how-gracefully-she-parents-her-children” type of way. No, I mean I am constantly asking the Lord for grace to try again, thanking Him that tomorrow is another day, and full of gratefulness that my children are also generally forgiving and fairly resilient. 

This parenting gig is no joke. The older I get and the more life throws our direction I realize that most of us parents don’t really know exactly what we are doing. We can arm ourselves with God’s Word, stand on His promises, ask for wisdom and discernment… and yet, many times it still feels like we are shooting from the hip. These tiny little humans that the Lord entrusted to us didn’t come with manuals. So sometimes in our weaker moments we are left feeling ill-equipped and do a whole lot of praying that we don’t mess this whole thing up. Can I tell you something? You can multiply this feeling by a thousand for the parent of a child with special needs. 

We’ve got one shot at parenting, and we don’t want to mess it up. As parents of a child with special needs, we find ourselves in the very unique position of being our child’s medical coordinator, educational advocate, therapy coordinator, records keeper, and insurance protector. We work hard to make a way for our children and to try to give them every opportunity to reach their highest potential. In a world where “raising awareness” has become more about the t-shirt, ice bucket, or bumper sticker than about true heart change and acceptance, we find ourselves grasping for ways to make a place for our children. Compile this with everyday things like having a job, being a wife and mother, and parenting other children besides your child with special needs, and shooting from the hip quickly becomes an understatement. There. Is. No. Manual. For. This. 

Having a child with disabilities is a tricky little dance. It’s two steps forward and two steps back. Many times, as we delight in our son’s newfound accomplishments, we see an old one slip away. It’s easy to get caught up in the daunting task of grappling with what has been gained and what has been lost. We are trying desperately just to communicate with our child and to make sure he knows he is loved. Most parents of children with special needs function on about three to four hours of sleep because disabilities like autism have no time zone. Our emotions run high and our energy low. This is the perfect recipe for imperfect parenting and the need for grace. 

Dear Parents, I hope you will remember that we can parent with grace. I’m finding more and more in this role of a special needs parent, that if I just offer up all I have and as much as I can, the Lord will cover all my imperfections with His grace. 

I’m willing to bet that we all get a little snippy, lose our cool, throw patience out the window, burn dinner, miss the appointment, and wonder what-in-the-world we are doing. I’m also willing to bet that the deeper issues we occasionally struggle with are not foreign to fellow parents who walk this journey with us. So, breathe deep and let yourself rest just a little knowing that you are not alone and that in all our inadequacies, God’s grace is sufficient. 

There is such a thing as imperfect progress. Thank the Lord! 

“My grace is sufficient for you, for my power is made perfect in weakness.” 2 Corinthians 12:9 (ESV)

First published at Irresistible Church

http://irresistiblechurch.org/parenting-grace/

 

The Power of a Positive Word: Children with Special Needs

I’m sure I stared at her with a deer-in-the-headlights sort of look as she spoke. “Your son is just awesome! He is talking so much and is so smart!” Of course, these are all things that I know to be true about my son, but hearing these words from another human being about my son who has autism is definitely rare. I fought back tears as the therapist helped my son into the car after a long day at the clinic—I’m not even sure I responded appropriately to her kind words.

You see, I’m not used to these comments. I have seen frustrated glances and shoulder shrugs. I have had multiple conversations with educators about all the things my son can’t do. The most cutting remark was a therapist who blankly said, “I just can’t do anything else with your son until you medicate him.”

Unfortunately, these are the things that most parents who have a child with special needs are used to hearing. There is a constant dialogue between parents and caretakers regarding their children with special needs, and sadly, the conversation is often centered on areas of difficulty.  Parents become beaten down and discouraged. That’s why I was so shocked when my son’s new therapist complimented him. She saw his strengths and made sure to let me know—it meant the world to me.

This is such an important thing to keep in mind for anyone working with those who have special needs. You need to understand what families like mine are used to. Most of all, you need to understand the power of a positive word.

Positivity is Powerful: If you are working in a special needs ministry or just happen to have the joy of knowing a child who has special needs, you need never underestimate the power of positivity. Every child has a set of God-given gifts and strengths. Look for ways to delight in the wonderful things they can do! In a world of negativity, this will fuel the hearts of both the child and their parents. In a case such as ours, it gives hope that others see glimpses of what we see when we look at our son.

“Anxiety in a man’s heart weighs him down, but a good word makes him glad.” Proverbs 12:25

Positivity is Contagious: This summer my son began therapy at a new school where he is surrounded by people who cheer him on and celebrate his strengths. And guess what? He rises to the occasion. Certainly, he still has struggles, but in an atmosphere of encouragement he works hard to overcome the obstacles of autism. We must remember that children who have special needs, although they may not verbally acknowledge other’s comments, still understand what others say about them and even how they feel about working with them. Your positivity will greatly influence the trust and relationship you build with a special needs child and their family. Positivity is contagious; spreading from child to family with your ministry as its source!

“Therefore encourage one another and build one another up, just as you are doing.” 1 Thess. 5:11

Positivity Does Not Mean Masking the Truth: When working with those who have special needs, truth and trust go hand in hand. Just because you encourage and focus on the positive aspects of a child, it does not mean that you should neglect to share with a parent any problems that arise. Often, parents are trying to work on medication changes or therapy changes for their child. Your input is important if there is an area of trouble. Sharing hard truths in love, covered by the positive things you see in their child, will make all the difference.

“Therefore, having put away falsehood, let each one of you speak the truth with his neighbor, for we are members of one another.” Ephesians 4:25

Positivity is powerful and can be one of your greatest tools when working with those who have special needs. It makes a difference in the life of a child. It makes a difference to families just like mine!

 

First Published at http://irresistiblechurch.org/power-positive-word-children-special-needs/

When Words Are Few And Tears Are Many: The Heart Cries Of A Special Needs Parent

The ache was so deep and the pain so raw, that I could not utter a word. There I was, on my knees in desperation, poised to cry out to Jesus. But trying to sift through the emotions that flooded my heart only rendered me more speechless.

It was too much. I had no words.

There in our tiny living room I knelt, eyes closed, as I imagined myself at the feet of Jesus. And even though I had no words, even though the hurt of our circumstance had overwhelmed me, I continued to kneel there weeping.

I was doing business with Jesus. No words necessary.

In our culture, we place a great deal of value on words. Sometimes our palms begin to sweat as we are asked to offer up a prayer in front of a crowd. We try so hard to say the right things. Sometimes we worry about sounding “spiritual” enough.

But God has never been a God of many words. He is a God of the heart. He has the sovereign ability to look past our inadequate words, and even past our weeping, as He peels back the curtains of our heart to reveal our true selves.

So, when words are few and tears are many, He sees your heart.

As I knelt on my living room floor, pouring out the heart cries of a special needs parent at the foot of my Savior on behalf of my son, no words were necessary. The Lord promises that even when our words fail us, His Holy Spirit intercedes for us.

“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.”  Romans 8:26 NIV

The truth is, I was feeling helpless. I was trying so hard to make a way for my son.  I was overwhelmed by the lack of understanding the world seems to have for a little boy like mine. It seemed as though even the very people who were supposed to be advocating for the success of our child just didn’t quite get it. Is there really no place for a seven-year-old, blue-eyed, wide-smiled, precious little boy who happens to have autism? I was hurt for him. And there is no other hurt like a momma’s hurt for her baby.

Although I can now quite accurately articulate the thoughts and feelings I was having that day, at the time I was left with nothing more than sobs. Sobs at the feet of Jesus. But there was no need to articulate anything because the Lord already knew.  

Dear friend, is there something burdening your heart? Maybe your words are few and your tears are many as you carry the weight of your child’s disability, or fight for your marriage, or strive to make ends meet.

Whatever the circumstance, run to the Father. No words are necessary. His Holy Spirit intercedes for you. You need only come to Jesus with your heart, He will refresh and restore your soul. He longs to exchange our grief for His grace, our burdens for His blessings, and our tears for His triumphant plan.

First Published at Irresistible Church http://irresistiblechurch.org/words-tears-many-heart-cries-special-needs-parent/

 

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/

From One Special Needs Parent To Another: Don't Give Up

Dear Parent,

I know how easy it is to feel like you are all alone in this, but you’re not. While your child’s special needs may be different from mine, we are on a very similar journey. I want to encourage you with three words. Simple though they may be, these three words are so important for the task the Lord has given to us. The Lord has entrusted you and I with the life of a child who has special needs. So, no matter how ill-equipped you may feel, no matter the severity of the disability, no matter how weary you have become, let these three words spur you on as you care for your child. From one special needs parent to another: Don’t Give Up.

I know your weariness. I know how you sleep with one eye open and one ear listening throughout the night, just in case. I know how you wake in the wee hours of the morning to change soiled bedsheets and to wash your precious child. I know that often times coffee and a prayer is what keeps you going all day. Don’t Give Up.

I know your discouragement. I know that no matter how many times you give yourself a pep talk, you will find yourself comparing your child’s development to other children their age. I know that for every milestone achieved, it seems there are a million more standing in the wings. Don’t Give Up.

I know your fears. I know you fear for the future of your child; wondering what level of independence they will have, their wellbeing, and what will happen to them when you are no longer around to make a way for them. I know you fear for your child’s education and whether the school budget or politics will limit their chance at having every opportunity for personal growth and success. Don’t Give Up.

I know your joys. I know that overwhelming sense of excitement when you watch your child achieve something for the first time. These are moments of pure joy that others might find hard to understand like when you feel as though you have just conquered the world because your child made eye contact with you for the first time. I know how one touch from your child can make all the days of struggle melt away in an instant. I know that little things are not so little in this life of ours. I know that those moments and milestones that bring us such joy are almost puzzling to the rest of the world. Don’t Give Up.

I know sometimes you might feel like giving up. As you fight and you push and you try your hardest to make a way for your child in this world, sometimes you become weary. Sometimes it seems like an uphill battle. Don’t Give Up. No matter how battle-weary you become, you must hold tight to this task the Lord has entrusted to you. Because no matter how ill-equipped you may feel at times, the Lord specifically chose and gifted you with this special child.

Let us pick ourselves up, dust ourselves off, and continue making a way for our children. Giving up should never be an option. Continue praying over your child, the Lord hears you. Continue those late nights and early mornings, the Lord is with you. Continue those therapy sessions and treatments, the Lord will provide. But most importantly, protect this gift that the Lord has entrusted to you and Don’t Give Up.

Psalm 127:3 “Children are a gift from the Lord; they are a reward from him.”

First posted at www.IrresistibleChurch.org 

This is Your Story: 3 Important Truths

Everyone loves a good story. We allow ourselves some vulnerability as we cry or share a good laugh over another person’s tale. However, when confronted with the pages of our own life, we are often discontent, desperately wishing we could re-write a few pages. We might even wish we could completely make over the main character, ourselves. The hardships, sleepless nights, medical conditions, or struggles just weren’t what we had in mind to fill the pages between “Once Upon a Time” and “Happily Ever After”.

Have you ever felt this way? Many of us have. Sometimes the Lord writes on the pages of our lives with permanent marker. Try as we may, we cannot blot out, color over, or erase His pen and are eventually left to embrace the marks of our Savior. It’s at this point of surrender that we discover He is the greatest story teller there ever was. He is the Master Story Writer; fashioning your story for His glory and for your fulfillment in Jesus Christ.

Here are three important truths to keep in mind as you trust the Lord with your story.

Comparison kills contentment. Every time. This is your story! Do not be concerned with the story the Lord is writing for someone else. He has a very specific plan and purpose for your life. One of the fastest ways of discouraging yourself is to compare your story to someone else’s.  Count your blessings, and not theirs. Do not miss the beauty written on the pages of your own life.

“A heart at peace gives life to the body, but envy rots the bones.” Proverbs 14:30

There is beauty in brokenness. Many times, the very things that you would not have willingly chosen for yourself, are what make your story most beautiful.  Life is not always easy. When you are faced with disability, you learn to rely on the Lord’s ability. When you face trials, you learn to rely on faith and trust. Sometimes tears precede triumphs. You must remember to give Satan no opportunity to discourage you from the purpose the Lord has for you. Have faith that you will be able to one day flip through the pages of your story to find that heartbreak brought hope, struggles produced strengths, and that beauty came from brokenness.

“And we know that in all things God works for the good of those who love him, who have been called according to His purpose.” Romans 8:28

There is joy on the journey. Each day you have the opportunity to choose joy. Our God is not the author of gloom and doom. Do not miss out on the joy of this life. Rest in the assurance of the Master Writer’s pen. The Lord longs to reveal Himself to you. Find comfort in His care, strength in His sovereignty, and peace in His presence.

“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13

God is crafting your story. There is no other story like it. Once you open your heart to the authority of His pen, trusting that He knows best, there is peace in resting between the pages of life. This is your story!

First posted on IrresistibleChurch.org  Blog.

 Thank you, Lord, for our story.

Thank you, Lord, for our story.

Asking for the Healing of a Loved One: To Touch the Hem of His Robe

Have you ever prayed desperately for someone’s healing? I mean the cry-from-the-bottom-of-your-heart pleading with the Lord for deliverance, freedom, and healing.  After all, God is fully capable of full healing. Doesn’t he see this great need? Doesn’t he feel the heaviness of your cries as they fall one by one before his throne? I know you are able, Lord. Please, I am asking for healing. It’s as though, in the corner of your heart, you hold out hope that if you just plead hard enough, you might somehow will your loved one to healing. I know this desperation. I know this cry.

As I laid in bed next to my little boy, he wrapped his tiny arms around my neck and drew in me. He kissed my cheek with his baby-soft lips and then laid his head down on the pillow. I continued to hold him as tears filled my eyes and a rush of emotions filled my soul. It’s crazy how this Autism thing works. When my son has struggled through a particularly hard day, I am crushed. However, this day he had not struggled at all. In fact, he had made wonderful eye contact, had snuggled, and talked to me throughout the day. It was a beautiful day of clarity and freedom from the chains of Autism that so often bound him. It may be hard to believe, but sometimes the wonderful days break my heart almost as much as the hard days.

I had seen glimpses all day of the little man that he is. We had shared smiles and giggles. His bright personality had lit up the room. We had played together and he had spent part of his day in a tent with his sister making choo choo train noises. He was able, for the most part, to communicate his needs and wants. It had been a beautiful day. Now as I laid in his bed holding him, I felt so very grateful for the blessing of this day, but I was also overwhelmed with sadness. As the parent of a child with Autism, I fully know that just as a ray of sun will peek through the clouds and then go back into hiding, this bright day of clarity would not last. Tomorrow would be a new day and I would once again be left searching for the little boy I know is locked somewhere deep inside my sweet boy. This thought ached deep in my heart.

I pulled my son closer; as though I was trying to hold on to him as tightly as I wanted to hold on to this day. Please heal him, Lord. I know you can. Without even thinking, I closed my eyes and imagined reaching out just to touch the hem of Jesus’ robe. If I could just touch Him. If I could just hold my son in my arms and touch Jesus. Just touch the hem of His robe.

You know this story, don’t you? The bible tells a story in Luke 8 about a woman who was sick. She had been sick for many years with an illness that would have alienated her from society and caused her to feel miserable. And there was Jesus. He had just calmed a storm at sea, restored a demon possessed man, and He was on his way to heal a twelve year old girl who was dying. Yes, this woman knew who this “Jesus” was. I can almost feel her desperation. Jesus, this man who professed to be Messiah, this healer of so many, was passing through. In complete abandon, I imagine her rushing out her door, desperate to see this Jesus. I know you are able, Lord. Please, I ask for healing. As she approached Jesus the crowd pressed in on Him. Was this it? Would she get this close to healing and complete restoration just to lose Jesus in the crowd? With her heart pounding in her chest, she pushed through the masses and was able to squeeze her hand through a small break in the crowd. If I could just touch Him. If I could just touch Jesus. Just touch the hem of His robe. With twelve years of sickness behind her and the thought of an eternity of pain, exclusion, and embarrassment ahead of her, she reached out and grasped just the hem of Jesus’ robe. Healing. Complete healing. Trembling, she came before Jesus and He told her, “Your faith has healed you. Go in peace” (Luke 8:48).

Desperation. Faith. Healing.

So, as I held my little boy, desperation rose up inside of me. If I could just touch the hem of His robe. I know you are able, Lord. Please, I ask for healing.

It’s very rare that I ever ask God to “heal him from Autism” anymore. My prayers have shifted. I believe that some parts of Autism are a very special gift. My son sees the world in different ways than you or I could ever imagine. In many ways, Autism gives my son a unique and special gifting and personality that I would not ever want to lose. It’s the frustration, the inability to communicate, the aggression and impulsivity that I pray he would be released from.

I have seen the Lord work miracles. I have seen babies live who were said to have no chance. I have seen cancer disappear when the doctors have no medical explanation. Yes, He is in the business of miracles and He is able. So I reach out to Him, to touch the hem of His robe, to ask for healing. Maybe one day He will answer “Your faith has healed your son. Go in peace.”

I have great faith in a great God, but I also have faith that He is sovereign and that He may not have plans to heal my son. It takes an equal amount of faith to trust that God is capable of healing, as it does to trust that He is sovereign and may withhold healing for a greater purpose that we may never understand this side of heaven.

Until the Lord lays it on my heart to quit asking, I will plead for healing on behalf of my son. If I could just touch the hem of His robe. I know you are able, Lord. Please, I ask for healing. I will also not stop trusting that the Lord knows best and that His ways are perfect. I find myself in the in-between; between desperation and dependency, fear and faith, helplessness and hopefulness, tears and trust.

If you find yourself in the in-between, just like me, remember these things: Our prayers do not fall before an unable God or an empty throne. He hears you, so ask. Our prayers do not fall before a limited God. He is able, so trust. Our prayers fall before an all mighty, all powerful, all knowing God. He is sovereign, so have faith.  Have faith even if it means trading your hopes for His perfect plan.

On those days that you are weary from the fight, remember that the Lord is close to the brokenhearted (Psalm 34:18). When days come that you wish so badly you could hold on to for forever just to see them disappear, remember that His ways are higher than ours and that He is not a God of mistakes (Isaiah 55:8-9). We must have faith enough to touch the hem of His robe and faith enough to trust if He responds with a “not now” or a “not ever”. If you are praying for the healing of a loved one, I’m sending you a hug. You are not alone.

 

 

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.

 

 

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!