Armor Up

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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"?

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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

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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/

 

Because I am a Special Needs Parent

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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

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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/

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!

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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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.

Miscarriage and Mother's Day

Emptiness. That’s the feeling I remember most. In the place of where a heartbeat should have been, there was nothing; leaving my own heart with a feeling of emptiness.

It was Mother’s Day weekend almost seven years ago that I lost this precious child, but time has not made the very real memory of it all fade away. How can you be so absolutely in love with a little life that has only existed for a few short weeks? I’m not sure how to explain it, but you can. 

I remember breaking down in tears at the hospital as they drew my blood and conducted tests to further prove what I already knew to be true, I had experienced a miscarriage. And then, to my surprise, a second heartbeat. I had miscarried a twin.

I have heard of other women miscarrying a twin. I have also heard of the “Vanishing Twin Syndrome”. But I have never personally known another woman who has experienced this. Apparently the people in our community during this time were not familiar with this happening and awkwardly offered up their condolences by saying things like “I’m really sorry, but at least you still have one baby in there!”

The truth is, no matter how thankful we were that the Lord allowed us to carry and deliver our precious son, Ezra, we still grieved over the loss of our other child. I still dream of what it would have been like to have twins. I still wonder how life would have been as “Huggins party of five.” We have never forgotten.

Because we had picked out both a boy name and a girl name for this pregnancy, and because we were able to deliver our boy, we gave our lost baby the remaining name, Abigail. And we have never forgotten her.

For our family, a life is a life no matter how small. Every year as Mother’s Day approaches I can’t help but be so very thankful for the family God has given me. Every day, and especially on Mother’s Day, I also can’t help but remember all of my babies, both here on earth and in heaven.

Going through the experience of having a miscarriage has given me a new perspective and a depth of understanding that I believe some people just do not possess. So, as Mother’s Day approaches, here are just a few things I hope you will keep in mind:

We Never Forget Our Babies:

I can remember the shirt I was wearing, the sterile smell of the doctor’s office, and the nauseating pit in my stomach. I vividly remember the long trip from the doctor’s office to the hospital as my husband and I were clutched hand in hand. I remember my mom driving eight hours to be by my side as I laid crying on my living room couch. I remember the feeling of loss.

It’s not every day that I think about Abigail, but it’s often. Probably more often than you might think. And I would venture to guess that if you know someone who has had a miscarriage, whether early on in pregnancy or further along, they never forget. Our children are a part of us forever, even if they were with us for only a short while.

This Kind of Loss Can Be Lonely:

It was my experience that people did not know exactly what to say, so for the most part, they said nothing at all. Because I was only a few weeks into my pregnancy, I remember feeling as though others might believe I was making too big of a deal about our loss. As if somehow I did not have valid reason to fall apart for a while after this loss of life, especially because I still was carrying the surviving twin.

I will tell you, this kind of loss can be lonely. So, I implore you friends, if you know of someone who has experienced a miscarriage, be there for them. If you worry about what to say, say that you love them through your actions. Sit with them, cook for them, and acknowledge the life that you know they have lost because it is very real to them. It is a different kind of lonely to go through a miscarriage alone.

Our God is a God Who Sees:

To the mother who has lost a child, God sees you. We may never know this side of heaven why the Lord gives and takes away, but I am thankful that He sees us through our pain and grief. I am thankful that He acknowledges the life of our little ones, because He is the giver of life and is infinitely aware of our loss. God sees our sorrow. He sees our broken hearts and is able to mend them. We are never alone. The Lord is good to carry us through those times when we feel others just cannot see or possibly understand. He sees you.

As this Mother’s Day approaches, I hope you will remember those who have babies both here on earth and also in heaven. I promise you, they are remembering all of their babies on this special day. Because a life is a life no matter how small and each child reserves a special place in its mother’s heart, forever.

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” 

 2 Corinthians 1:3-4

 

 

 

 

 

 

Is There Room At Your Table For Me?

I watch my son’s eyes constantly. He may be mostly nonverbal, but his eyes speak loudly. Even when he cannot bring himself to look at me, I watch his eyes and often times, they tell me what I need to know.

I watch them dart from one thing to the next in rapid motion: this usually tells me that he is overstimulated. I watch his eyes cut mischievously at me to sneak a quick glance before he does something he knows he is not supposed to do: this reminds me that despite Autism, he is “all boy” and is testing his boundaries. I am crushed as I see the frustration in his eyes: he wants to be understood. I watch his eyes light up in wonder or excitement when he sees something he desires: he notices his environment. I see the sparkle in his eyes when he is able to stare back into mine: I can see his love for me and my heart melts.

Certainly there is impulsivity and many unknown factors on this Autism journey. There are days when I stare into my son’s eyes and all I can find is a lost little boy, trapped in his own reality. But more often than not, I can find him. So I watch. I watch ever so closely. I anticipate. I wonder. I take him in.

Because I naturally watch my son’s eyes, it’s no wonder that I was watching them closely as we entered my parent's house for Thanksgiving dinner. I often take for granted the fact that not everyone understands what all the holiday season entails for a family with a child who has special needs, so let me give you a quick rundown of all the thoughts that were going through our heads as we joined our family for a Thanksgiving feast.

How long do you think we will be able to stay? He is already a little overstimulated today. Oh goodness, there are pretty decorations everywhere. We are going to break something. Or even more, we are going to throw something and then break it! I hope they don’t mind him singing at the top of his lungs- he loves “We Wish You a Merry Christmas” right now. This may be too many people. We may have a meltdown. Will the other kids or adults acknowledge him? Hopefully he will keep his shirt on the whole time. Do you think everyone will mind if we watch “Signing Time” or “The Little Engine that Could” for about fifty times in a row? Maybe this was a bad idea. Stop thinking negatively…Maybe this will be a great Thanksgiving experience! Oh gosh, he just threw his cup into the already decorated Christmas tree…awesome.

It’s true. No matter how cool, calm, and collected I try to act, there are a flood of thoughts filling my mind during large family get- togethers. Thanksgiving was no exception.

So, as my anxious thoughts rose and we walked in the door to this Thanksgiving feast, I watched my little boy’s eyes for a cue.

I watched him as he did his little step, hop around the large living room and on into the dining area. We have a very large family so there were three beautiful tables set to welcome their guests. Ezra noticed these tables and stared. I watched as his eyes inspected every inch of these tables with their beautiful plates and crystal glasses. He nodded his head at each place setting as though he was mentally counting the places in anticipation for all the guests to arrive and be seated. I took him in as he took in the unfamiliar tables.

Ezra finally moved on from inspecting these tables and began playing with his toys on the floor nearby as we waited for other family members to arrive. I noticed that periodically, he would glance up from his toys to see if the tables were still there.

As each family arrived bearing trays of food and hugs for all, my boy was not left out. Our family has embraced Ezra in such a loving way. My momma’s heart swelled as each niece and nephew greeted Ezra with a “Hey Ezra!” or a sweet pat on the back. Although my son hardly glanced up from his busyness with his toy trains, he knew his cousins were there and he knew that they had included him in their greetings.

As our families sat down to eat, I asked where Ezra should sit. Without hesitation the answer was “Right here!” as I looked at a place setting with a glass plate and crystal cup; just like everyone else’s.

It was as if Ezra knew exactly where to go. He walked to the table and once again nodded his head as though he was mentally counting each place setting. When his nodding made its way around the table, he stopped at his own chair and a smile spread across his face. He knew. There was a place at the table for him.

He was not asked to sit at a table off to the side. He was not left to roam around the room and graze from a plate. He was not given a “special” plate in the event that he might break one of the nice ones. There was a place at the table for him, and he knew it.

Was I nervous about the beautifully decorated table? You betcha. Did I have visions of him possibly pulling the table cloth with all of its adornments into a messy heap on the floor? Yep. Was it a possibility that he might break something? Yes. But my parents knew this. It was more important to them that Ezra have a place at their table than for him to be excluded or pushed to the side.

And Ezra knew it. I could see it in his eyes.

We didn’t have some magic dining experience. We still had to help Ezra feed himself. We still had to remind him to “Sit down, Ezra.” We still had to use his i-pad to help calm him while he was in an unusual setting. But our Thanksgiving meal was complete because there was a place at the table for Ezra.

I keep thinking about my little boy as he nodded his head at each place setting when we had first arrived that Thanksgiving day. I just can’t help but imagine that he was mentally counting the chairs and wondering Is there a place for me at the table?

I have heard too many stories of children with special needs being unwelcomed by friends and even family members. I know that many times precious souls just like my Ezra are brushed to the side. They are excluded. 

You know, it was a possibility that Ezra may not have even been able to sit with our family at the table this Thanksgiving. Some days are just not good days. Some days leave him sprawled out on the floor in a sad or even aggressive mess. But even if he had been too overwhelmed to join us at the table, he would have had a place there, saved for him, just in case.  He would have known that there was a place for him at the table.

Could it be that a true reflection of your heart might be revealed by whom you would welcome to your table?

As the Christmas season approaches, I encourage you to make room at your table for everyone. Just because a person can’t speak doesn’t mean that they desire no communication. Just because a person cannot make eye contact doesn’t mean that they wish to not be acknowledged. Just because a person seems to be in a world of their own doesn’t mean that they are unaware of their surroundings and the things being said and done around them.  Just because a person may not comment on your beautifully decorated dinner table does not mean that they do not greatly value being welcomed at it.

As the Christmas season approaches, I encourage you to create an atmosphere of hospitality for everyone. This sounds easy until you take into account that “everyone” may mean that you need to be ok with singing at the table, the possibility of a broken plate, a wheelchair in the place of one of your wooden ones, a feeding tube, an oxygen tank,  or an i-pad on the table. We should search the crevasses of our hearts to see who truly has a place at our table.

It seems to me that the people you welcome to your table are also the people you welcome into your heart.

Won’t you welcome sweet children like mine to your table? Won’t you welcome those who are often cast aside? Won’t you welcome those who are least likely to be welcome at someone else’s table?

They are waiting. They are waiting for you to welcome them. I know. I can see it in Ezra’s eyes.

"Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angles without knowing it." Hebrews 13:2






I Ask God to Come Sit With Him A While

When I lay him down to sleep, I pray to the Lord his soul to keep…then I kiss my little boy, say “goodnight”, shut the bedroom door, and wait for what is usually a very long night.

I almost forget that our nights do not look (or sound) anything like most other people’s nights. The double-diapers, zip-up pajamas on backwards, hospital bed with netting kind of nights. The singing-at the-top-of-his-lungs-for-hours, screaming, kicking the walls, laughing hysterically, or “scripting” kind of nights. Yep, I almost forget these things are not “normal” because this is our normal; it’s just part of the way we do life.

We never know what the night will bring. Sometimes, there are nights of quiet rest. Other times we get very little sleep as we listen to our son wrestle through the night.

But every night begins in the same way. I lay down beside my precious son, and pray. I have prayed for him while his tiny hands push against mine. I have prayed for him as he tries to hit me. I have prayed for him as he snuggles up close. I have prayed for him through his tears and tears of my own. I have prayed for him through happy chattering and smiles. Regardless of the behavior or the evening, I pray. I pray for Ezra’s future, that he will have a restful sleep, for his safety, for him to know how much his mommy and daddy love him, and most importantly that he would know how much Jesus loves him.

One particularly hard night, my prayer shifted. Ezra was wound up. He could not focus on anything. He was everywhere and nowhere all at the same time. I continued to whisper softly to him “I love you, Ezra. I love you.” My whispers were met with even wilder thrashing in his bed. My momma’s heart was breaking for my son. What was this thing that seemed to be so much greater a force than he or I were able to control? I sobbed through my usual prayer over my son as I dodged an arm, a leg, and another arm. And just before I could no longer utter a prayer between heartbroken tears, I asked God for something I had never asked for before.

Please Lord, come sit with him a while. Come and sit with him. Fill his room with your presence. Reveal Yourself to Him.

There is such a feeling of helplessness when you are the parent of a child with special needs. My son is often times a prisoner in his own brilliant mind. At night especially, his body seems to betray him and I find myself at a loss for how to help. There are just some things that I cannot do. This thing, this Autism, seems far bigger than me some days. But I know who is even greater.

So, in this small bedroom with its hospital bed and toy covered floor, I asked God to come sit. I placed my trust in the reality of God’s presence and power.

In Exodus 33:14, God reminds Moses of the power of His presence as He declares “My Presence will go with you, and I will give you rest.”

Rest. That is what I want for my precious son. Not just sleep. Rest. I want him to rest in the comfort of security. I want him to rest in the knowledge that God does not ever leave or forsake us (Deuteronomy 31:6). I want him to rest with a peace that surpasses all understanding (Philippians 4:7). I want him to rest in the presence of the Lord.

Now, each night as I lay Ezra down to sleep, I still pray over him, but I always ask the Lord to come and sit with him a while. I have a very beautiful picture in my mind of Jesus coming and sitting at the foot of his bed. I ask God to reveal Himself to Ezra in ways that only He can. And I trust. I trust in the reality of God’s presence.

Do we still have some hard nights? Yes we do. This isn’t some halfhearted trial to see if my child will sleep better if I say “the magic words”.  Definitely not. This is faith. This is faith lived out by acknowledging what I already know to be true about God and His promises. This is me declaring that I have very little control when it comes to this thing called Autism. This is me remembering that God loves my child with an unconditional, sacrificial love. This is me offering up all of my best efforts and asking God to work in ways that I cannot and that He is completely able. This is me reminding my son each night that he is never alone.

This is me declaring the reality of God’s presence and power as I ask Him to come sit with Ezra a while. Thank you Lord, for using my little boy to remind me of your faithfulness and the power of Your presence.

“The Lord is near to all who call on Him, to all who call on Him in truth.” Psalm 145:18

 

The Window

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

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

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

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

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

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

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

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

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

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

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

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

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




Snapshots

Let’s do some real life together today, shall we? My family’s reality probably looks a little different than most. That’s because we have a precious little boy who has Autism. Today I am sharing some real life pictures that help to explain some of our day-to-day “normal”.  Our Ezra is an amazing little boy! He is my “little puzzle” and each day I have the wonderful opportunity to learn from him and learn more about him

Ezra barefoot trains.jpeg

Ezra’s “thing” is trains. It is very common for a child with Autism to become attached to a particular character or interest. Ezra loves to line his trains up. He always puts them in a particular order, has to have them lined up perfectly, and will literally spend hours reconfiguring their order and placement. Also notice the bare feet! Ezra has Sensory Integration Disorder and struggles to keep shoes or socks on for very long-they are too constricting. Have you ever seen a mom with a barefoot child in cold weather and mentally judged her for not properly covering her child’s feet? Have you ever stopped to think that there may be a reason that she just absolutely cannot keep shoes and socks on his/her feet?

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Ezra spends a lot of time sitting in the bathtub…without water…with his clothes on. There is something about the tight space and tall walls that calms him. When Ezra becomes overwhelmed, many times he will take himself to go sit in the bathtub. He doesn’t generally take toys with him. He just sits. And the simplicity of the solid color walls and closed in space soothes his sensory overloaded mind!

Ezra standing in chair.jpeg

Ezra likes to study objects from very different angles. This is a form of “stimming”. Stimming is one of the symptoms of Autism. It is a repetitive body movement that self-stimulates one or more senses in a regulated manner. 

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Ezra can ride a bike too! With the help of Ezra’s AmTryke, Ezra gets to ride his bike along with his big sister. There are special straps that help to secure him in his seat and straps that keep his feet from slipping off of the pedals. There are also special straps that hold his hands on the handle bars but he is just not ready for that yet…and he is not yet willing to let go of the trains in his hand! The AmTryke has a bar that extends from the back so that we can push him. We have faith that one day Ezra will be able to ride a bike all on his own!

Ezra in mud.jpeg

Ezra loves to play in water…even muddy water! We encourage this sort of sensory input, especially because for so long he was absolutely terrified to get any dirt on him. To some, this is just a cute picture of a kid in a mud puddle, but to us, this is a victory!

Ezra in bed.jpeg

This is Ezra’s very special bed. It zips up completely and the zipper is on the outside. This is for his safety. Ezra is unable to sleep in an open, standard bed. When put in a “regular” bed, he jumps all night and is unable to bring himself to go to sleep. Ezra also tries to elope. (Both insomnia and elopement are typical with many children who are “on the spectrum”) Ezra finds comfort in his cozy bed and will often times “request” to be zipped in so he can calm down and give himself rest. 

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I love this picture. Besides the fact that it is just sweet, this picture represents Connection. It is often times hard for Ezra to make eye contact, let alone to allow someone into “his world”.  We captured this precious moment this last week. The key to making a connection with Ezra is to make yourself available. We usually are most able to make a connection with Ezra when we lay on the floor. Then, he will usually come and sit near us. Connection is not something you can force. Connection happens by patiently pursuing and by waiting for Ezra to invite you “in”.

I am no Autism expert, but I have learned that the key to life “on the spectrum” is letting go of “normal” and embracing the unexpected, sometimes crazy, very special life that the Lord has blessed us with. These little snapshots of our life give just a glimpse into our every-day “normal”. 

I Asked For Help

I have struggled through this blog post. Seriously. Every. Single. Word. That’s because this particular blog post has caused me to be very vulnerable, very transparent. What’s wrong with vulnerability or transparency? Absolutely nothing.  In fact, I consider myself a pretty transparent person. I strive to live with authenticity as much as I can. I certainly don’t shy away from opening up about things and sharing my story…or so I thought.

I thought I didn't mind sharing until it came to this. This one thing that, until the last few weeks, I didn't realize was such a struggle for me. It would be very easy for me to tuck “this thing” away, keep it to myself, and not share it will all of you. But that wouldn't be holding true to the very purpose of my blog which is to offer encouragement to parents who are living with children “on the spectrum”, but also to offer understanding and insight into the life of a special needs family- the good, the bad, and the ugly. So, I have decided to share…

I did it. I asked for help.

 Just so you know, I do not struggle with asking for help in most areas of my life. If I have a question at work, I will ask it. If I need help on a project, I will ask for help. If I have a problem with my car, I am certainly not about to touch it. It has never been a goal of mine to portray myself as “Miss Independent”. I have no problem asking for help!

…except when it comes to taking care of my home and my family. To me, this is one area that I should be able to excel in without someone’s help. It is my honor and privilege to take care of these things. In fact, I love it! I love cooking, cleaning, ironing, and folding laundry. There is something about seeing fresh lines in the carpet from the vacuum cleaner that makes my heart happy. I love being home when my children are out of school. It fills my heart with joy to snuggle up with my two kiddos to read a good book or to play a game. But the fact of the matter is, it is really hard to do all this as a parent of a special needs child.

I hope by now (if you have read my previous blog posts) that you have no doubt how much I absolutely love my precious little boy (who has Autism). I consider him one of my most precious blessings. I also consider it such an honor that the Lord would entrust such a special child to me! Having a child with Autism has given us a whole new perspective on life, love, and what matters most.

That does not mean that it is not hard.

In our particular case, being the parent of a special needs child means that as soon as I try to make tea for dinner, my little boy is trying to pull the boiling water of the stove. It means that I cannot turn my head for very long for fear that he might try to escape out the door. It means that there are fewer home cooked meals and lots more fast food meals because we have to ride in the car to calm him down.  It means many sleepless nights. It means that while trying to accomplish even the smallest of tasks, my precious child is throwing his toy trains at the walls, the windows, the TV, and at his sister. It means occasional aggression, frustration, and anger spewing forth from a little four year old boy. It demands monthly paperwork and logs enough to be considered a full time job. It means that by the time my little ones are asleep in bed, I don’t have the energy left to accomplish all the many things that need to be taken care of.

It’s not all the time. But generally, if I am occupied with anything other than him, he begins to fall apart. Because he does not have the language to express himself with words, he tells me with his body that he just does not know what to do with himself.

Because both of my children are so very precious to me and out of obvious necessity, I chose them first.

So, the dishes had begun to stack up. The floor sometimes looked like a treasure hunt. There came days that my entire family was going to have to go our various ways naked, stay home-naked, or wear three-day-already-worn clothes. There were a lot of unwritten blogs. Chili Frito Pies became a delicacy in our household. Once evening came, I could hardly keep my eyes open.  I am supposed to be able to manage all this! I am supposed to be able to control my child’s behavior. This is my number one job! Why do I feel as though I am doing nothing well? The one thing that I had taken so much pride in doing, I realized I wasn't able to do. I had to ask for help. I had to let go of some pride-something I thought I never really had an issue with.

Here is something else you should know about us special needs parents:  #1 We trust very few people with our children.  #2 There are few who we would feel comfortable with having come into our home on a consistent basis. This is not an issue you can push. It is what it is. We are protective of our little ones and protective of our not-so-ordinary lives.

I prayed and prayed for the Lord to provide just the right person. I knew it would have to be a person who understood the situation, who understood Ezra, and who had a very big heart. The Lord provided.  A very dear friend of ours agreed to be my “helping hands”. She has come in and helped me with laundry. She has helped with the dishes and with cleaning. She has been my second set of hands during the kids bath time (this activity always requires two adults). She played with my little girl so she would not have to play by herself during her little brother’s in-home therapy session.

The first time I walked in to a clean house and an unloaded dishwasher, my eyes welled up with tears. You may think I’m trying to embellish this story, but I’m not. The time I was able to have help bathing my kiddos, our family was able to spend extra time in the evening playing together. In the last week, I have been able to bring my children home from school and just play with them and give them the attention they need without the heaviness of wondering how on earth I was going to have all the other things done that needed to be done for my home to function properly. There has been less chaos and more order.

 Yes, it was very hard for me to get to the place of having to ask for help. Yes, I have been a bit embarrassed to admit that I can’t do it all.  But I am now realizing that it just might be an ok thing, healthy even. I find it almost liberating.

Believe me, there are still many things this special needs mom has to take care of, but what a blessing it is to have someone help to lighten my load. I praise the Lord for my sweet friend and her “helping hands”. I am truly thankful that the Lord continues to use this Autism journey to mold me and refine me…even when it’s not easy and sometimes requires me to let go of some things, such as pride.

If you know a family that has a special needs child, pray about how you might be able to minister to them. Don’t expect a thank you card-they are deeply grateful, they just don’t have an extra second to sit down and write a complete sentence. Even the smallest gesture is a big deal. A word of encouragement, a trip to the grocery store for them, or a cooked meal can make such a huge difference in the life of a special needs family. Just be there for them. Let them know that it’s ok to ask for help!

 

Playing in the backyard: Ezra loves the sound of the wagon crunching the leaves underneath! Grace loves blowing bubbles for her baby brother! ..note her very unique sense of style! 

Playing in the backyard: Ezra loves the sound of the wagon crunching the leaves underneath! Grace loves blowing bubbles for her baby brother! ..note her very unique sense of style! 

Talk About Us Behind Our Back

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

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

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

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

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

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

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

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

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

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

Grace: “I know momma!”

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

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

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

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

Me: “Because God made everyone special and…”

Grace: “And he loves them very much!”

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

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

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

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

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

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

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

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