What it's like to be a Special Needs Family during Coronavirus

Special needs families prepare all year for school breaks. We have to. The bulk of our budget and resources go towards therapies, activities, specialized babysitters (not just anyone will do), and supports to make it through. We plan around ESY (Extended School Year) and know that without that extra structure, our kids would be at an extreme disadvantage. Although Summer brings fun and sun, it also looms over our calendar and financial planning as a heavy weight. For many who have special needs, summer is the most vulnerable time. Long breaks, if not executed with the utmost care, can result in regression and lasting effects.

What happens when there is an unexpected long break from school or even more, what if summer comes early? For the family with a child who has special needs, the ramifications of such a thing are tremendous.

But here we are at home. There was no month of reading a social story to prepare our children for the extended break. There was no gathering of sensory supplies to throw together a quick classroom. What takes us all year to plan for and agonize over has come crashing in with no warning. Many of us parents find ourselves balancing work with becoming our child’s speech therapist, physical therapist, occupational therapist, special education teacher, and behavioral therapist overnight. There is no “down time” or “let’s chill” time in the world of special needs. Our kids are high strung, thrive on schedules, and need constant direction. For many of us, the only “chill time” is Velcro-ed to a visual schedule for a 15-minute interval that still requires supervision and “directed play”.

Many parents feel ill-equipped to provide the education and supports our special kid’s need. Although many school districts are going above and beyond to provide IEP’s, worksheets, resources, and websites, the actual implementation of these great tools will take place at home, with the parents. Just yesterday a mom contacted me explaining the great fear she has- her son has come so far and has worked so hard. She’s terrified she’s going to “mess it all up and he will regress”. Regression in the world of special needs can take years to regain. We live in a different time continuum than everyone else. Every day counts.

What about finding someone who will come help during this extended time at home? We have three people currently who are equipped and able to care for our son who has autism when we are not home. Two of those people are family members who live far away. It takes weeks or even months of planning to be apart from our child who has special needs for even a day. Because of the nature and severity of his autism, only a person with special training and a unique understanding of his needs can care for him.

Furthermore, many of our kiddos have compromised immune systems. We love that you might want to help, but quite honestly, it’s not worth the risk. Many of our kids don’t understand being sick and it scares them. It takes two adults to get medication in our kid. Recovery from an illness notoriously takes twice as long since our kids are still getting the hang of blowing their nose and what it means to cough and clear out the “junk”. Sickness is just different in our world so while we would love the help, we must protect.

Our family’s situation is more the rule than the exception when it comes to the predicament that special needs families find themselves in.

There’s so much more that I could share here, but hopefully this paints just a little picture of what it means to be a special needs family during this time. So now, what can you do to help?

Let a special needs family know you care- Most special needs families aren’t going to take the time to explain to you what our life looks like right now. We don’t want to burden anyone. We are also currently working in the trenches. So, send a text or make that phone call. Even if we don’t answer right away, just knowing that you thought of us will mean the world to us. Besides physical isolation, there is often emotional isolation and disconnect between us and the outside world. This has just been elevated to an all new high. Just today a mom of a special need’s child reached out and said, “it’s only day two and I’m already dying”. What if you were the one who reached out to tell her you have been praying for her today? What if you became the bright spot God used in her day to remind her that she has a friend praying her through? What if, because of you, she was reminded that she is not alone?

Drop off a care package- It is estimated that 28% of U.S. children with disabilities live below the federal poverty threshold.  According to the U.S. Department of Agriculture, the cost of raising an average child to the age of 18 is roughly $240,000. Autism Speaks estimates that the lifetime cost for an individual with autism and or intellectual disabilities averages $1.4-$2.4 million. The difference is staggering and there are so many reasons. Financially speaking, it is possible that some special needs families will struggle immensely during this time. Medications for our children must go on. Supplies for teaching them at home are desperately needed. Many special needs families live in a precarious lurch of paycheck to paycheck and weighing the greatest needs of our children above all else. Drop off some sensory supplies, leave some canned goods and if you find baby wipes or flush-able wipes send them over! Special needs families are not able to go from store to store seeking out toilet paper and bread. It’s just not something we can do.

Pray- Partner with special needs families through the power of prayer. Could it be that God might be using this time to force our society to “Be still and know that I am God” (Psalm 46:10)? If you could, spend some time being still and lift in prayer families of special needs children. Pray for peace to fill our homes. Pray for patience as we maneuver uncharted waters. Pray for provision as our needs are great. Pray for an umbrella of grace for ourselves and our children. Pray for breakthroughs in the lives of our children, because God is able. Pray dear friends! And then, reach out and let special needs families know that you have been praying for them. Prayer is one of the greatest ministries you can offer us.

Seek out a special need’s family. Let them know they are not alone. Meet needs if you are able. Most importantly, keep them in your prayers. This vulnerable population needs our attention. Let’s be the hands and feet of Jesus!

Open Letter to The Treatment and Learning Center for Autism, Tyler, Texas

Do you have any idea what it’s like to feel as though there’s absolutely no place in the world for your child? No place safe enough. No one who desires to take enough time to truly get to know your child and understand him. No one that truly believes in his potential. No place that would assign value to him. 

A few years ago, that is the exact place we found ourselves in. We felt hopeless and helpless. During one of our darkest seasons, God allowed our paths to cross with The Treatment and Learning Center for Autism.

Over the course of the last several years, the staff at TLC have breathed new life into our family. It is all because they chose to believe in my child when no one else would.They challenged him academically because they could see his potential. They challenged him behaviorally because they believed he was capable of overcoming. They didn’t allow him to settle, even though it was the harder road to take. They pushed him to reach his full potential. Things that many others said he would never be able to do, he has surpassed. Our son has overcome so much in the last several years and we believe this is greatly due to the fact that the staff at TLC have given their all on behalf of our child.

They have built relationships with our son. They have gotten to know him: His likes, dislikes, personality, and character. Once they got to know our son, they fell in love with him and in turn, he fell in love with them. Once you capture the heart of a child, you can then capture their mind. That is exactly what the staff at TLC has done. 

The TLC staff have gone above and beyond the call of duty. The extra time they have put in to offer support, help us to implement strategies within our own home, to assist during melt-downs, to help our child integrate into social settings, and to encourage us to press on could only have been done out of the overflow of their hearts. We will never forget and will always be grateful for their selflessness and willingness to be a support to our family. 

For the very first time in the life of my child, have I been able to drop my son off at school and leave without a pit in the bottom of my stomach. I haven’t had to wonder or worry if he would be safe and handled with care. I haven’t had to wonder if he was truly learning or being challenged to reach his full potential. For the first time in his entire life, we have been able to breathe deep and rest assured that he has received the upmost treatment and care. For the first time, our son has known what it is like to have true relationships with people outside of family. He has had a community built around him to love him, challenge him, and guide him. 

These are the things that are priceless. These are the things that every Special Needs Parent longs for in the life of their child. These are the things that, sadly, are not offered to families like ours in most places. 

The Lord is leading our family to a new city and a new season of life. We are leaving the comfort and safety that TLC has offered. And while we are super nervous and extremely sad to leave behind our TLC family, we know that we could never have made this move if it had not been for their constant help and support over these last few years. Our son would not be in the place where he is today. I believe he would’ve never developed the skills that he has now without the help of the TLC staff. 

I know it must be a great undertaking to keep programs like The Treatment and Learning Center going. If you have ever wondered if it’s truly worth it, our family is living proof that TLC is in the business of changing lives. It’s not just a behavioral therapy center. TLC is impacting the lives of those who are often times cast aside or never given a chance anywhere else. For our child, TLC has been a symbol of hope and promise of a future filled with bright possibilities. 

We will forever consider The Treatment and Learning Center home. We will always be grateful for the impact they have had on our family. Thank you, from the bottom of our hearts, for the difference you have made in the life of our child. It is our prayer that God would continue to pour out His blessings on TLC and its staff as they continue to change the world, one child at a time. 

Blessings,

Jake and Nichole Huggins

So many special friends throughout the years…wish we had pictures of them all. TLC staff, you know who you are! THANK YOU!!!

Armor Up

In the stillness of the morning, before sun awakes, I find Him there. I stagger to my chair, coffee in hand, and pull up my soft, checkered blanket around me. This is our meeting place.

I shut out the day that is to come – with it’s changing of the sheets, daily sanitizing, picture schedules, and behavior charts – and allow God’s presence to envelop me in peace.

I can’t tackle the day on my own; in my own power. This journey of our son living with severe Autism can at times be all consuming. From sun up to sun down, our life is a whirlwind of love, pain, laughter, frustration, and perseverance. Therefore, I must daily equip myself for whatever may lie ahead.

In Ephesians 6:10-11 it says “Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil’s schemes” (NIV).

This is what I must do. In the stillness of the morning, while sitting with my checkered blanket, I must “armor up.” Satan would love nothing more than to paralyze me with worry for all that this autism journey entails. The enemy would love nothing more than to make me feel defeated, ill-equipped, depressed, or full of dread for what is to come.

Friend, I don’t know what kind of journey you are on but let me encourage you to “armor up” each day.

The Helmet of Salvation: Protect your mind dear friends. There are so many times that I leave my mind unprotected and allow my thoughts to run wild. I begin to worry about my child’s future, his aggression, and fearing for the unknown. Instead, I must remember to surrender every thought to the Lord and to remember that He is sovereign. Do not forget that Christ died for you and for your child!

Breastplate of Righteousness: Protect your heart. Satan likes to remind us of all the times we have failed as parents. Goodness, have I messed up. There is no manual for this special needs parenting gig and sometimes I fall short. When Satan beings to attack our heart, emotions, or self-worth, we often times freeze with shame. Protect your heart, friend. Remember that you are forgiven and dearly loved by God. God has entrusted your precious child to you for a reason and He gives us grace to do better each day.

Sword of the Spirit: Trust in the truth of God’s word. The enemy will tempt us to feel as though there is no hope on this journey called life. Find your meeting place with the Lord each morning. Wrap yourself in the truth of His word so that you are ready for the day ahead. When we stand firm on the truth of God’s word and we daily glean from its pages, we are able to wield it against all lies from the enemy.

Shield of Faith: Cling to hope in Christ. When the enemy attacks with insults and setbacks, it is easy to fall into the temptation of defeat. As a special needs parent, I must be sure to keep my shield up so as to protect myself from being hit with lies such as “He will never overcome,” “Your child will always be alone,” “No one understands what you are going through.” Put up your shield friend and keep faith. Do not doubt the promises of God.

Belt of Truth: Know God intimately so that you know His truth personally. Satan fights with lies. He is an accuser. He sends messages that contradict the very heart of God. When the world says that my son is an outcast or gives little hope for the future of my child, I can stand firm knowing that God’s plan for my son is to give him a “hope and a future.” (Jer. 29:11)

Shoes of the Gospel of Peace: Be available and ready to share the good news of Jesus Christ! The enemy wants to cloud our vision so that we are so overwhelmed in this special needs parenting life, that we forgot the very purpose for which we (and are children) have been created. We are each created to bring glory to God and to lead others to a saving knowledge of Christ.

Armor up friends! There is no “special accommodation” or excuse for not living a life sold out to Jesus Christ, special needs parenting and all. What if this special child you have been gifted with is the very way that God intends for you to share Christ with others.

Find your meeting place with the Lord each morning. Remember that there is purpose in this life God has gifted you with. Fill up on the pages of His word. Stand on His promises and protect yourself against an active enemy. It’s time to armor up!

First Published for my partners at Joni & Friends and Irresistible Church at

https://irresistiblechurch.org/armor/

What if it's not "Just a Season"?

Seasons come and go. They are ever changing. Although winter might drag on for what seems to be a little too long, eventually spring comes pushing through with it’s new growth and life.

For most of us, there are seasons of life that ebb and flow. For example, we try to hang on to the sweet memories of the “infant stage” when the nights with our babies are long but the snuggles so sweet. Although the early years can be hard, we are encouraged to cherish them knowing that this season of life will pass all too quickly.

There are seasons of life people look forward to with expectation – whether it be the young family season, empty nest or retirement season, we know that life is ever changing.

But what if it’s not “just a season”? What if the predictability of life’s ebb and flow for most people looks nothing like the life you’ve been handed?

This is where we find ourselves. Maybe some of you do too? As the parent of a special needs child, maybe you are coming to terms with the fact that there may never be a “diaper season,” “feeding tube season,” “baby toy season,” or “empty nest” season. This may always be our normal. No seasons, just life.

We pray for the best and make plans for the forever. We dream up house plans we would have never thought of before – the one with the built in apartment for “someday if he’s independent enough” or the protective padded walls “because he’s getting bigger and stronger.”

We say goodbye to seasons and learn to embrace a unique ebb and flow all our own. Growth and milestones are celebrated as they come. We love fiercely, cry often, and learn to maneuver an entirely different world; a world with no seasons.

So what if it’s not “just a season?”

Look for the God Moments: Our God is a God who pursues the hearts of His people. He is never absent from our every-day-less-than-glamorous, messy lives. If you have gotten to the place that God feels far removed, it is not because He’s not there, but because you have taken your eyes off of the Savior. It is easy to get so caught up in a world with no seasons, that we forget to look for the ways God is at work in our everyday lives. Look for the God moments. Look for the many little ways He reveals His presence in the midst of life. His whispers of love are in the hand held, eye contact made with your child, the song that filled your heart, and in the friend He was sure to put in your path today. In the midst of the never-changing seasons, God wants to meet us in the middle of it all. Look for the God moments to spur you on and lift you up.

Trust God’s Sovereignty: Do you trust in the sovereignty of God? I hope that you do. If you find yourself in a world with no seasons, this fundamental question is of utmost importance. Hold on to the knowledge that God does not make mistakes. Your child’s disability comes as no surprise to Him. Furthermore, God handpicked you to be the parent of your special needs child. This means that however ill-equipped you feel to live in a world with no seasons, God knew you were up for the task. Although at times we feel like cowering in the circumstances of life that come crashing down around us, we must pick ourselves up and dust ourselves off. Walk in a boldness knowing that if God has called you to this way of life, He will see you through it.

Find Gratitude: Although the days are hard and the nights are long, I have found a place of gratitude to rest my weary soul – so that when I breathe in the grace that God has so delicately covered the fragments that are our life, I can see the work of His masterful plan and find peace in trusting Him through the process. You see, if we didn’t know the pain of falling apart, we would never know the joy of being held together by the Lord. If we didn’t know the desperate heart cries of a parent on behalf of their child, we would never know the victory found in trusting God’s sovereign plan. If we didn’t know what it’s like to earnestly pray for healing, we would be less likely to notice even the smallest of ways that God is moving and the milestones or small victories made. Be thankful for the lessons discovered in having to depend on Jesus as your only source of strength, for some have never discovered the joy that can be found in doing this.

If you find yourself in a world with no seasons, take heart. God is working in the midst of it all. When we begin to look at our season-less world as a gift, the heaviness in our hearts begins to dissipate. Do you trust Him enough to embrace a life that is so unique, so dependent upon Him, so broken and yet so beautiful, that if lived in obedience to Him…it just might point others to Jesus? And if so, dear friend, wouldn’t it be worth it all?

“Many are the plans in a man’s heart, but it is the Lord’s purpose that prevails.” Proverbs 19:21

First written for my partners at Joni and Friends and Irresistible Church

https://irresistiblechurch.org/just-season/

To the Warrior Parents

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/

Loving From Afar: A New Perspective on Christmas

I sat on my couch, just inches away from my little boy who was playing with his trains on the coffee table. We had been home from school for at least four hours and he had yet to make eye contact with me, touch me, or acknowledge my presence in any way. So there I sat, just inches apart from my little one. I so wanted to scoop him up and snuggle him, to kiss his precious face all over, or to tell him how much I had missed him while he had been at school that day. But I know better.  I know that in moments like these, he needs silence and to not be touched. That’s just the nature of this thing called Autism.

So, I sat. I watched him play with loving pride swelling up inside of me. He’s so beautiful, such a precious soul, a most wonderful blessing, and treasured gift. It takes an unbelievable amount of self-control for the mother of a child with Autism to learn to love from afar. Often times, that’s exactly what I must do.  

I began to think of another of another parent who had to love from afar. The thought had never crossed my mind before.

I have heard beautiful songs and sermons written about Mary and the beautiful perspective of the young virgin mother of Jesus Christ. What a huge responsibility. What fear and excitement she must have felt. What joy must have flooded her soul as she cradled her baby boy in her arms knowing that He was the Messiah, the Son of God.

I have listened to stories about Joseph, the young carpenter man.  What an exercise of faith it must have been to take Mary at her word and to take her as his bride. What must it have felt like to have been chosen to father the Savior of the world? I’m certain he found his heart overwhelmed at times as he found himself plunged into the very middle of God’s story of redemption.

I have even listened to accounts of the spiritual battle between heaven and hell on that not-so-silent-night. While angels sang “Glory”, all of hell shuddered at the birth of the New Born King. Never before had the birth of a child brought forth such a commotion as the countdown to the cross and Christ’s victory over death came rushing into the world on that starry night in Bethlehem.

But what about God the Father? Certainly, it is His gift, the gift of His son Jesus that we celebrate each year. But I just wonder how He must have felt as He watched Jesus, His one and only Son, be birthed into this world. I wonder how His heart must have raced as He beheld that tiny babe lying in the manger. How His soul must have swelled with all the joy, love, admiration, and awe that a parent feels at the sight of their newborn child. Was there a collision of emotion as He watched Immanuel, knowing what the birth of His child meant for the world and what this sin cursed world meant for the life of His child?

As God the Father watched from His heavenly throne, with all the delight that fills a new parent, did He long to hold His precious Son? To kiss His soft cheeks? To hold His tiny hand? Friends, the Lord is capable of the most complete and unconditional love. Therefore, I can only imagine the love He felt for His Son, Jesus. As God the Father shared His Son with the rest of the world, as He made the ultimate sacrifice for you and for me, He chose to love His baby boy from afar as Jesus was wrapped in clothes and placed in a manger.

This thought struck me as I sat watching my own sweet boy who was busy playing with his trains; as I was loving him from afar.

 How thankful I am that Christ does not ask us to conquer temptations without having been tempted Himself. How thankful I am that we do not experience the shame of sin and guilt without Jesus having borne the sins of the world and fully understanding the weight of which it carries. How thankful I am that we do not experience the deep pain of losing a loved one without God the Father knowing what it is like to have His one and only Son sacrificed for all of mankind.  He has walked our roads, feels our pains, knows our joys, and understands our struggles. God has never withheld Himself from our everyday circumstances but rather He willingly thrusts Himself into our world with all understanding and compassion.

As I sat there loving my child from afar, I felt a peace come over me. I am so thankful that I can come to God with the longings of my heart. When I long to touch my son, long to hold him, long to kiss him, long to hold his tiny hand, but instead must muster up all the strength that is within me to withhold these gifts that are so precious for a mother to bestow upon her child, I turn to Christ.  And in a way, I wondered if just maybe the Lord understands what it must be like to love your child from afar.

Whatever your Christmas may look like this year, whatever you are facing, whatever turn your life has taken this year, may I encourage you that God is so very near. He is Immanuel, God with Us and He cares for you!

Merry Christmas!

Merry Christmas from our family to yours!

Because I am a Special Needs Parent

You see me in the office and wouldn’t know I run on three hours of sleep every night. Because I am a special needs parent.

By the time I get to work in the morning I have fought battles, cried, laughed, overcome, and failed. My day started hours ago. Because I am a special needs parent.   

I strive to ensure schedules, order, and consistency for my child who thrives on such things, while embracing the chaos of an ever changing and unpredictable disability. Because I am a special needs parent.

I have learned of a deeper kind of love than I could have ever imagined. Because I am a special needs parent.

I bear scares down my arms from my child’s aggressive meltdowns but they do not compare to the pain inside my heart as I’ve had to restrain him from hurting himself or others. Because I am a special needs parent.

There is an incomprehensible joy that floods my soul when my child takes me by the hand or looks me in the eyes. Just one touch from his hand gives me hope that one day a touch will turn into a look, a look into a gesture, a gesture into a word, and a word into the ability to communicate. This burst of joy is strong enough to give hope that presses on until the next time. Because I am a special needs parent. 

Exhaustion sets in as I fight for the rights of my child. He is worth believing in. He is worth being given an education. He is worth being given every opportunity to reach his full potential. It is my daily task to ensure this happens. Because I am a special needs parent.

I long for connection with others yet feel so alone and wonder who could ever understand this beautiful, crazy life we live. Because I am a special needs parent.

There is no achievement too small. I have learned to celebrate even the smallest of things: One word spoken, an independent bite of food taken, a hug given...these are monumental in our world. Because I am a special needs parent.

I know his facial expressions by heart and can most often predict their meaning. I understand the “gibberish” that many hear when he speaks. I know what songs bring him peace and what sounds set him off. I know when it’s time to go and when we can stay a little longer. Because I am a special needs parent.

I fight for my marriage as the stresses of disability and all that it entails wedges its way into our time for one another. Tensions are high and patience is low. We learn to be extremely intentional in our pursuit of each other. I know how extremely blessed I am to have a husband to walk this journey with me. Because I am a special needs parent.

Just his smile is enough. It lights up my world and fills my heart. Because I am a special needs parent.

There is a balance I’m constantly struggling to find as I strive to give time, attention, and affection to my little girl who is not disabled. Because I am a special needs parent.

I fail at being a good friend, keeping up with family members, remembering birthdays, and finding time to socialize. Because I am a special needs parent.

I plead with the Lord on behalf of my son. Every night I present my requests to Him knowing that He is fully capable of healing my son, but also trusting Him if His answer is “no” or “not yet”. Because I am a special needs parent.

Considering all these things, I would do it all over again. This precious child the Lord has entrusted to me has taught me more about life, love, and what matters most. Because I am a special needs parent.

Though many times I feel so very ill equipped, I know that God has specifically chosen me to be the momma of this precious little boy. God is not in the business of making mistakes. So I trust Him and lean on Him for the strength to press on. Because I am a special needs parent. 

When we are Broken and Poured Out

I had to restrain my child today. This is the part of severe autism that no one likes to talk about. As well as he is doing and as much as he has overcome, everyone has a bad day. This was his.

He had stubbed his toe on the corner of the wall hard enough that it bent back the nail inside his sock. It must have been very painful. How frustrating it must have been to have been hurt and not be able to tell anyone about it. How terribly painful it must have been when I was asking him to put his shoe on so we could go to school. How was I supposed to know his nail was bent back inside his sock? And he couldn’t tell me. Not with words anyway.

Do you know what it feels like to have to move in such a way to keep your child from hurting themselves or others? Can you possibly imagine what it’s like to have to set up a barrier of mats between yourself and your child so as to protect yourself (and him) until he is able to harness his rage?

I can tell you, in that moment, all hope seems to be sucked right out of you. As the parent of a special needs child, you are left feeling drained, defeated, and depleted as a darkness sets in like no other. All the good, everything your child is working so hard to overcome, all the strengths, all the victories and accomplishments seem to fade in the gravity of the mere sixty seconds of rage that feels like an eternity.

I was finally able to figure out why he was so upset. Once he calmed, I helped him with his toe nail and we were able to get his sock and shoe on. He pulled me in and gave me a big hug and kiss as if to say “Thank you, Mom. That’s exactly what I was trying to show you but didn’t know how. I’m so sorry.” But by the time we got in the car and he walked into the school building with his little happy-go-lucky, step-hop that he does, I was worn out.

Just that morning I had spent time alone with the Lord. I had asked him to fill me up! And now I already felt like any “filling” that had been done had been spilled out. I was done with my day. And it was only 8:30 in the morning.

How quickly we allow our circumstances to dictate our perception of reality and steal our joy.

The Lord gently reminded me of the verse I had studied earlier that morning. “If anyone is thirsty, let him come to me and drink. Whoever believes in me, as the Scripture has said, streams of living water will flow from within him,” –John 7:37-38.

Whether you’re a special needs parent or not, there’s such a good reminder in these verses.

“Come to me and drink” – God never forces Himself on us. In the midst of life’s chaos, we must seek Him to fill us and quench our thirst. The world will throw those things at us which are sure to leave us feeling parched and worn. All of the “positive thinking” can fill us with a temporary and counterfeit hope, but it is a weak alternative to the living water God offers to sustain us with.

“Whoever believes in me” – Is your trust in Jesus Christ? Friends, our joy and hope will never be found in our circumstance. When our focus is taken off of the Lord, when our lives reflect that we are functioning in our own strength, when we have allowed ourselves to settle into a faltering faith, we will surely be overcome.

“Streams of living water will flow from within him.” – Water is powerful. Get enough water with a large enough current, and a river can overcome barriers with little effort. Do not forget that the river of the Spirit of God can overcome all obstacles. When we depend on the Lord for our strength, the matters of this world pale in comparison. Keep your eyes fixed on the source of the river of life within you.

My son’s occasional aggression is heartbreaking. We all have real, very sharp cutting struggles in our lives. God does not ask us to brush off our battles. He does, however, ask us to come to Him. Our hurts are His hurts. He longs to fill us up and sustain us with His joy, grace, and peace that surpasses all understanding. When the waves of life crash around you, keep your eyes fixed on the source of living water. He will get us through.

First Published for my partners at Joni & Friends and Irresistible Church

https://irresistiblechurch.org/broken-poured/

When They Say, "I Don't Know How You Do It."

“I just don’t know how you do it.”

I get this a lot. It is usually accompanied by a very sympathetic shake of the head with wrinkled brow. Or “I couldn’t do what you do.” Insert here an overwhelmed and far off look.

These things are frequently shared with me by friends and family who know our story and who have a front row seat to our autism journey. But before you offer up these familiar phrases, here are three things you should know…

1. I can’t do this on my own. We parents of high needs children don’t have some sort of hidden superhero cape. There is no extra dose of strength or stamina that the Lord has measured out to us. I have to daily depend on the Lord and ask for His strength.

There are times when I become so completely overwhelmed as a special needs parent. I have had my own meltdowns and breaking points. There are times when my heart feels so completely broken for the struggles of our child that I just cry and feel helpless…and that’s when I usually realize I’ve been doing life on my own, in my own strength. I’ve been forgetting to give each day, thought, and moment to God. Once I remember that God is in control and completely sovereign and that He has a perfect plan and purpose for my life and the life of my child, I can operate out of a much more confident and peace-filled place. It doesn’t mean life becomes easier, but it does mean that I don’t have to face struggles alone. So, the next time you see me rocking along on this journey of having a child with severe autism and you think, I just don’t know how you do it…I don’t. I don’t do it. It’s a me and Jesus thing and without Him, I’m a mess. Thankfully, we were never meant to shoulder the weight of this world on our own. 

2. Others make all the difference. Parenting a child with autism is never a one-person job. I am not equipped to meet my autistic child’s every need. I am, however, equipped to do my very best to diligently seek out those who can help me meet his needs in the best way possible.

Ever since our son was two years old and received his diagnosis, he has had a team, also known to us as “Ezra’s entourage” if you will. There have been therapists and educators all along the way who have partnered with us in helping our son to reach his full potential. When educators crossed our path who did not truly believe in our son, he regressed and it was heartbreaking. When educators crossed our path who believed in him and pushed him to do more, he rose to the occasion every time. There have been therapists in our home for years who have shown Ezra love and care. These people helped us to not feel so alone. Ezra has a team built around him who are there to challenge him and cheer him on. When educators, therapists, and the family work together, it’s a beautiful thing.

There have also been family members and friends who have come alongside of us on this autism journey. A simple meal brought, someone to help you with groceries, or just a text to check in can brighten a special needs parent’s day. For those who have poured themselves out to support and love our family, you have made all the difference.

3. You can and would do what I do. Many times people say, “I couldn’t do what you do.” But the truth is, yes, you would. There is no manual for this special needs parenting life. I didn’t go to college for this, wasn’t prepped or prepared for this. But every day the sun rises and we make sure to the best of our ability that we do the very best we can. We love and care, we fight for our child’s rights, we push him to do his best, we surround him with those who believe in him, and we pray. We pray big, God sized prayers. You just never know what you are capable of doing until it’s the very thing you are given to do.

We don’t operate out of some sort of special needs expertise, but rather out of a place of unconditional love. We depend heavily on the Lord to see us through and others to encourage and support us along the way. It is because of these things that we are able to walk this autism journey. We are not alone.

“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

First published for my partners at Joni &Friends and Irresistible Church at

https://irresistiblechurch.org/say-dont-know/

The Importance of Breaking Through Roofs

Some men came carrying a paralyzed man on a mat and tried to take him into the house to lay him before Jesus. When they could not find a way to do this because of the crowd, they went up on the roof and lowered him on his mat through the tiles into the middle of the crowd, right in front of Jesus.”
–Luke 5: 18,19 NIV

Special needs parents, when it comes to church and your child, I want to encourage you to break through roofs. I know how easy it is to stay under the comfort of your own roof. It’s safe here. We can do “home church.” We aren’t accepted by the crowd. Home is best.

Boy, do I understand where you are coming from. Taking our son who has severe autism to church can be quite a challenge. We’ve not always been welcomed at churches. Even at our church now, we are welcomed with open arms, but that does not mean that it’s easy. We have successful times at church and we also have meltdown disasters. It’s a toss-up each week! …but we will keep trying. Why? Because our child’s faith journey is worth breaking through roofs.

“To lay him before Jesus…”
We can learn a thing or two from these men Luke writes about. These men knew the importance of being in the presence of Jesus. They obviously had determined in their hearts that this disabled friend of theirs needed to be in the presence of Jesus as well. Not only is it important to be in the presence of Jesus, but Hebrews 10:25 reminds us that it’s also important to be around other believers “not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day drawing near.” We need each other! You need the encouragement and love of a church family and they desperately need to learn what it is to embrace the beauty of the disabled. How can this ever be unless we determine in our hearts the importance of functioning within the Body of Christ?

“Could not find a way to do this because of the crowd…”
Crowds don’t always seem to understand disability. We watch as our son is overlooked, pushed to the side, or excluded. This man was no exception. Parents, I know how hard it is to constantly fight to make a way for your child. I want to encourage you not to give up. I find more and more that it’s not that the crowd is always hateful or discriminatory, but rather it’s just that they do not know or understand disability. Misunderstanding can lead to uncomfortableness. Make a way through the crowd for your child, lend understanding where there is none, share your life with others so that they can embrace the unfamiliar.

“They went up on the roof and lowered him on his mat through the tiles…”
Desperation. That’s what this was. This was a won’t-stop-at-anything, climbing-up-the-roof, breaking-through-roof-tiles kind of desperation. I can only imagine that this kind of determination was birthed out of a tremendous love for the disabled man. They knew he needed an encounter with Jesus. When was the last time you were this desperate to make sure you found a way for your child to join in worship, to be a part of a Faith Family, to bask in the presence of Jesus? It’s not easy. It takes desperation. It might take breaking through roofs one tile at a time. It may look like just only making it through the door of church the first Sunday, maybe the next Sunday you make it down the hallway, maybe the next Sunday your child loudly makes their presence known during the middle of the worship service…and there might be looks and there might be misunderstanding. Because ministry to those with disabilities is messy. But parents, do not give up on making a way for your child in the church. The Body of Christ is disabled itself when not ALL members are represented and a part of its work.

“Into the middle of the crowd, right in front of Jesus.” 
I want to encourage you that after a little over a year at our church, my son now asks “Church Please?” “Church?” “Sunday Please?” It doesn’t always look perfect. Some Sundays are a flop. But I trust that God’s Holy Spirit is going to meet him right where he is at. Our son knows that there is something special about church. It’s taken a long time to get to this point but I encourage you parents, don’t give up. Your child’s faith journey is worth making a way for…one roof tile at a time.

First written for my partners at Joni and Friends and Irresistible Church at https://irresistiblechurch.org/importance-breaking-roofs/

Ezra and his daddy praying together during Vacation Bible School at church. 

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!

A New Year and a New Thing!

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

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  

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. 

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

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/