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

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

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

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

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

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

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

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

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

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

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

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

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

When we are Broken and Poured Out

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I just don’t know how you do it.”

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

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

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

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

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

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

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

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

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

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

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

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

Families in Hiding

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

Keep My Running Shoes On

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

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

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

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

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

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

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

First Published for my Partners at Irresistible Church

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

When it All Goes Wrong

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

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

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

1.  Flaws today do not determine failure in the future.

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

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

2.God’s got a bigger plan than you.

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

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

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

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

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

Parenting with Grace

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

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

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

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

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

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

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

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

First published at Irresistible Church

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

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

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

It was too much. I had no words.

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

I was doing business with Jesus. No words necessary.

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

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

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

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

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

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

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

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

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

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

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.

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 eleven 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

When it Rains, it Pours

In the last two weeks, I have sat in more doctor’s office waiting rooms than I have in the last two years combined. Some of this was for “well checks”, some for my daughter, some for my son, and some for me, but it all just seemed to hit at the same time. Just the other day, I found myself in waiting room number six, sitting beside a sweet elderly woman. We struck up a conversation and it seemed as though she and her family were having a rough month of health as well. At one point in our conversation I found myself saying “when it rains, it pours!”

Super. Glad I could be such an encouragement.

The truth is, I had allowed myself to let the “Why Me’s”, “What If’s”, and “Could Be’s” overwhelm me by waiting room number six. I would love to tell you that I offered my new friend some super “Christianese” lingo, but I didn't. Don’t worry, I wasn't all “gloom and doom” either, but I mostly just sat and listened to her, smiled and nodded, and offered my profound “when it rains, it pours” two cents in. The conversation could have led to so much more. It could have been deeper. It could have offered hope. But I was tired, self-focused, and just really wanted to sulk in waiting room number six. (Totally embarrassing)

Anybody else ever been there? The overwhelming weight of the “Why Me’s”, “What If’s”, and “Could Be’s” can take such control over our hearts and minds if we are not careful. My words to this sweet lady have rung in my head since I spoke them- When it rains, it pours. Was my heart really so heavy that I could not see beyond that present moment? Had I really allowed the “things” of life to overshadow all the many blessings the Lord has so graciously given me?

I needed a shift in perspective. I needed to allow the Lord to “refresh the weary and satisfy the faint” (Jeremiah 31:25) that I carried in my heart. I needed to remind myself that God is much bigger than waiting room number six or any other circumstance I am facing.

Can I tell you this, friends? “Because of the Lord’s great love, we are not consumed, for his compassions never fail. They are new every morning.” (Lamentations 3:22-23)

Easier said: “When it rains, it pours”….that’s right, the Lord doesn't just sprinkle His blessings and mercies on us each day. No, He pours them out! It is so very easy in our human flesh to overlook all of the beauty and blessings the Lord has poured over our lives, and to feel consumed by the many circumstances of life.

I will choose to count my blessings. Let me tell you how I was about to leave for work Wednesday morning, knowing I had a doctor’s appointment later that afternoon for which I was not sure how I was going to be able to pay, and in our mailbox sat a one hundred dollar bill for “The Jake Huggins Family”. (The Lord provides!) Let me tell you how after a week and a half of my Autistic child struggling terribly with aggression, he let me hold him last night at bedtime and gently touched my face with his little fingers. (The Lord is merciful!) Let me tell you how the Lord has open up opportunities for meaningful, adult conversation this week with dear family and friends- something that we are not always able to do. (The Lord is right on time!) …I could go on with a multitude of blessings that the Lord has poured over us in the midst of the trials of life.

 It’s true, “When it rains, it pours”.  The Lord pours out His love, grace, and mercy on us each day. He offers us promises and hope that far outweigh the “Why Me’s”, “What If’s”, and “Could Be’s” of this life. There is nothing that better cultivates a heart of thanksgiving than remembering the sovereignty of God. He is so much bigger than any surgery, bigger than any test result, bigger than Autism, or any other trial that may come our way.  Thank you Jesus!

I needed this reminder. Maybe you did too?

…and if you see a sweet little old lady in a doctor’s office waiting room, please give her a hug for me and tell her “God’s got this!”  

Ezra had an EEG a few weeks ago. We have more testing coming up.  Prayers for our little guy are appreciated!

“Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken.” Psalm 55:22 

Love: It's Not What You Think It Is

Today is Valentine's Day. Today we will see a flood of pictures of oversized teddy bears, boxes of chocolates, kids wired from an overdose of red food dye, and beautifully lit dinner tables to be shared with that special someone. Today is a great day to celebrate love.

As we celebrate love, my heart cannot help but feel just a little heavy. Love. What a word. It's a word that holds so much meaning. It's a word that means so many things. Unfortunately, it is also a word that is becoming more and more overused and abused. The word "love" (in many cases) has become a careless word. This ought not be so.

As I work with this generation of teenagers, my heart breaks as I watch them search for this idea of "love" that the world tells them to embrace. It is a counterfeit kind of love. It is a cheap impersonation. It is a word built on fleeting emotion and not on truth. Little by little, I watch these students give themselves over to this careless version of "love". It is a kind of love that is conditional. It is a kind of love that takes. It is a kind of love that is fleeting. And I am watching this idea of "love" leave these students confused and empty.

But you see, it's not just our teenagers that have been fooled by this diluted version of love. The world as a whole has dressed "love" up in a glamorous suit, and has paraded it around as though it is something that can be put on and taken off, only used for opportune times, can be shared with whomever, and can be thrown away if another more glamorous opportunity comes along. No wonder our students are confused. No wonder more and more marriages are falling apart. No wonder society has become bored with this word called "love."

Friends, true love is not glamorous. It's just not. In fact, I would go so far as to say that true love is the complete opposite of glamorous. Love is hard. True love is sacrificial. True love perseveres. Love says "I see all of your flaws and I still choose to love you." Love is a choice. Love is the commitment to stick it out. Love is forgiving. Love is helping, caring for, and making time for someone else. Love is not cheap. In fact, love can be costly. Love demonstrates patience. Love means more than romance.  Love is not superficial. True love is unconditional.  Unconditional love looks past skin color, sexual orientation, religion, or political beliefs. True love offers peace. True love offers truth covered in love. True love does not turn its head to ignore. True love is messy. True love is complicated. True love is simple.

In my own life, true love has taken on so many different meanings. In my own life, true love means pursing my special needs son with my love even when he fights, hits, or pushes me away. True love is my husband telling me how beautiful I am even though I cannot feel the right side of my face and it now sometimes droops. True love is cleaning, cooking, wiping poop, waking early to lay out clothes, kissing boo boos, and making time.  Love is making sure that my little girl understands her value and worth. Love is building my family up.

Ultimately, love is more. It is so much more than the world portrays it to be. This canned version of "love" that our world promotes is quickly leading our hearts and minds astray.

As I have the wonderful privilege to teach in the classroom, to speak from stages and to share about the love of Jesus with others, I have noticed a dramatic shift in our culture. Many times there is a sense of awe when I share about the unconditional love of Jesus Christ. How amazing that Jesus Christ could love someone like me? A sinner. Broken. In need of saving. And He loves me!  And while most times, this is still a common response, I am noticing another growing response. Oh, Jesus loves me. That's cool, I guess. Though much of this has to do with a greater issue of the condition of someone's heart, I can't help but wonder if our world's watered down version of "love" has helped to create this nonchalant "whatever" attitude towards Christ's unconditional, sacrificial love.

Friends, I beg you to not let "love" become a casual, commonplace, or careless word. Romantic love should never be casual, commonplace, or careless.  True love should never be casual, commonplace, or careless. The love you have for your family or friends should never be casual, commonplace, or careless. Most of all, I hope that you realize that Christ's love for you is never casual, commonplace, or careless.

Christ's love for YOU took blood, torture, tears, and the weight of the world's sin. He saw into the very fabric of our hearts, he saw our imperfections, our darkest secrets, our deepest hurts, and He chose to sacrifice His life for us because He loves us. Christ demonstrated the ultimate example of love, and it was anything but glamorous or flippant.  He pursues us each and every day with His unconditional love.

I hope you have a wonderful Valentine's Day. I pray your heart is full. I hope you have a perfectly tender steak dinner with the one you love or receive one of those little red and pink stuffed animals that you will wonder what in the world do with come tomorrow.  But most of all, I pray that you would understand what love is. Love is not glamorous, but it is beautiful. It is beautiful because true love is deep enough to withstand all of the ugly, wonderful, messy, and complicated things that life throws our way. True Love is a beautiful thing.

"And I Pray that you, being rooted and established in love, may have power, together with all the Lord's holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge- that you may be filled to the measure of all the fullness of God."

Ephesians 3:17-19

He Makes Me Lie Down

Sometimes life is just hard. Sometimes our hearts cry out with a deep longing for clarity, direction, and peace. There are times when the weight of life’s circumstances cloud our perception of our blessed reality. There are times when the Lord allows a shift, a speed bump, or even a road block to interrupt our everyday lives. What happens when our well formulated plans are completely ruined and our everyday rush comes to an unexpected halt?

 I am so thankful that when, in our most broken moments, the Lord still is near. Many times we miss Him in the midst of trials because we have mentally allowed our circumstances to become larger than God, the Creator of the universe. When we do this, we will find it hard to crawl out of a pit of despair. But you see, we are promised that “He will never leave us nor will He forsake us” (Deuteronomy 31:8).  God is with us even in our greatest struggles. We have a choice to look for Him in the midst of our trials. Do not underestimate the Lord, He loves to reveal Himself to His people when they earnestly seek His face.

This verse was recently spoken over my life by a complete stranger: “The Lord is my Shepherd, I lack nothing. He makes me to lie down in green pastures…” (Psalm 23:1-2 NIV) This verse hit me in a way that it never has before. For the sake of context, please allow me to share these first two verses in their entirety.

“The Lord is my shepherd, I lack nothing. He makes me lie down in green pastures, He leads me beside still waters, He refreshes my soul.” Psalm 23: 1-2 (NIV)

These verses have always sounded so peaceful to me. How peaceful it would be to lie down in green pastures and to be led beside still waters. I have never really paid much attention to one particular word in this verse…makes.

“He makes me to lie down.” This word “makes” implies an involuntary action. Sometimes the Lord causes us, or makes us to “lie down”. Sometimes He makes us hit our knees. Sometimes He allows trials to make us cry out to Him.  Sometimes He allows our plans, our goals, or our dreams to fail so that we are made to stop, to “lie down”, to slow down, and to seek His face.

You see, before the Lord can “lead me beside still waters”, lead me to the place He has planned for me, or lead me to the mission He has prepared in advance for me, He sometimes chooses to make me “lie down.”

What will you do when the Lord makes you to “lie down”?  Will you wallow in self-pity? Will you ask “why?” without truly seeking His will? I believe many of us “lie down” and we choose to not get back up. When the Lord makes us to “lie down” it is not always comfortable.  We are not accustomed to stopping. We have agendas, we are rushing, we are doing, and we generally do not like it when our plans are messed with.

What if the Lord wants to ruin our plans in the best of ways? When He makes you to “lie down”, will you seek His face? His voice? His will? His “why”? His way?

I believe the Lord sometimes makes us to “lie down” to remind us to depend on Him.  Sometimes He makes us to “lie down” to protect us. Sometimes He makes us to “lie down” so that we can stop and realize how truly blessed we are. Sometimes He makes us to “lie down” because it is the only way He can get our attention.  There are many reasons He may cause us to “lie down”, but when He does, my prayer for you and for myself is that we would be quick to seek His face.

You see, the Lord doesn’t want to leave us “lying down.” He wants to “lead us beside still waters.” God calls His children to be actively led by His spirit.  But before He can lead us any farther, sometimes He may cause us to stop, and “lie down.”

His word says “The Lord is my shepherd, I lack nothing…”( Psalm 23:1)The Lord will equip you with everything you need for life’s journey and He will “refresh your soul” (Psalm 23:2).

Hang in there dear friend. If you are going through a desperate time, if life’s circumstances seem to be overwhelming, if your plans have been ruined, if your heart is so heavy you can hardly breathe…He is there. He has not left you. He will not leave you. Listen for His voice. He is inviting you on a journey. He will give you everything you need. He wants to lead you and refresh your soul.

There are blessings in the “lying down.”

Speaking of "lying down". guess who got into bed to snuggle with us for THE VERY FIRST TIME EVER!!!!? That's right! Ezra's new "thing" is to snuggle as a family in mom and dad's room! ...I can get used to that!

Alone in a Crowd

It can happen to any of us, and it does. It can threaten our grasp on reality, and it will. It makes us feel overwhelmingly unique in our struggles, though many times we’re not. It has the ability to suck the joy right out of our lives, and we let it. It’s the feeling of “Alone”.

I will be the first to say that I have allowed the feeling of “Alone” to take control of my life at times. The trouble is that when we allow “Alone” to take the wheel of life, it can be a very dangerous ride. “Alone” gives us a false sense of reality. Although our natural desire is to connect, we begin to build walls of protection around ourselves as “Alone” whispers, “No one else would understand”, “No one wants to hear about this struggle”, “What would people think about you if you told them?” , “Yes, you are completely alone.” So with each lie that “Alone” whispers, we add another brick to the wall of protection we are building around ourselves until we become trapped in a self-made fortress of loneliness, feeling cut off from the rest of the world, and longing for connection outside of its towering walls.

Yep, that’s me. As a little girl who grew up in a broken home, I built walls. As the victim of abuse, I built walls. As a young girl with an eating disorder, I built walls. My college years were a time of healing and a time to discover who I truly was in Christ. The Lord gave me strength to tear down some of those bricks that I had worked so hard to put up (my “hedge of protection” that in reality was a fortress of isolation).

I have found that in adulthood “Alone” still offers its fair share of opportunities for wall building. Financial struggle? Put up some bricks. Trouble at work? Put up some bricks. Struggle in a relationship? Put up some bricks. Job relocation? Put up some bricks. Health problems? Put up some bricks. Because surely “I am the only one going through this right now” and “No one wants to hear about this” and “No one would understand.”

I admit to you that just as quickly as I have found the strength to tear down walls of protection, I have just as quickly re-built them with new bricks handed to me by lies from “Alone”. Maybe you struggle with this as well?

But then something happened. Something forced me to decide whether I was going to allow myself to suffocate in self-built walls of protection and the feeling of “Alone” or to break down walls of loneliness and come to grips with the fact that we are all in some way struggling with something- I am not alone.

Our son was diagnosed with Autism two years ago. I cannot begin to describe the loneliness a parent can feel as the parent of a special needs child. I instantly began to build walls of protection with bricks handed to me by lies from “Alone.”

Who could possibly understand what it is like to hear your child’s unsettling screams deep into the night? To have the constant fear that he might elope? Fear of self-harm? Fear of him never being accepted? Fear of what his future might hold- or might not hold? Who could possibly understand how much effort and hard work it took you to change his diaper, brush his teeth, get clothes on him, keep clothes on him, and go somewhere? To watch him struggle? Who else has felt judgmental glances? Who else must try to filter through rude whispers about their child?

Who could understand the overwhelming joy you have when your child makes eye contact with you? Who could possibly comprehend the excitement of holding hands, the triumph of playing appropriately with a toy, or the praise that floods your soul when you make a connection with your child-no matter how small. There are tremendous blessings, joys, and triumphs of being the parent of a special needs child, but who else would understand or want to know about them?

And so the wall building began…I was very busy about appearing to have it all together while building walls of protection and buying into the lie that I was completely alone.

What’s sad is that in a world of social mediocrity, we can get away with this. It’s not hard to look fine, feel completely alone, and get away with it-without someone taking the time to ask, truly care, or invest. It seems we all have full plates, are too self-absorbed, and are too busy building our own walls to stop and ask how the other person is doing.

A friend of mine, who also happens to be the parent of a special needs child, recently wrote this after attending a Sunday morning church service, “So, it is possible to feel completely alone in a room full of people.”

Ever felt that way? Alone in a crowd? I sure have. But my friend’s comment got me to thinking… if she felt alone in her struggles that day, and I felt alone in my struggles that day, is it possible that there were hundreds of other people who felt alone in their struggles that day as well? Thousands? Millions?

And just before I let the walls of “Alone” overtake me, I decided to break free. Having a special needs child has been one of the hardest, most beautiful things that has ever happened to me. You see I finally realized, after a life full of wall building and buying into the lies of “Alone”, that the fact of the matter is: I am not alone.

Each of us have struggles, a past, wounds, triumphs, and joys. None of us are alone. But we are buying into the lie from the enemy that we are “Alone”. It’s the same enemy that the bible says is out to “steal, kill, and destroy” (John 10:10).  Do not let the lies of “Alone” steal your joy or your hope.

Maybe we could all stand to do some “demolition work” in our lives. To break down our walls of loneliness. To invest ourselves in other people’s lives. To have real conversations about real things with real people. I believe what we would find is that, in fact, we are not so unique in our struggles.

Maybe the church, as a body of believers, could stand to do some “demolition work” in the midst of its people.  To break down walls that “Alone” has worked so hard to build up. To unmask the hearts of its people and invest itself in authenticity. Because truly, the church was never meant to be a place for perfect people, with perfect lives, who handle life’s curves perfectly. I believe what we would find is revival.

Friends, do not buy into the lies of “Alone.”  You see, not only are you not alone in the fact that we all are trying to make it through this thing called life together, but I want you to know that God promises to never leave you or reject you! He goes before you. He wants to walk with you on this journey. The greatest desire of His heart is for you to have a relationship with Him, to talk to Him, to lean on Him, and to ask for His strength as you break down life-long walls of protection you have built around yourself. He so desires you that He felt it was worth giving His Son’s life for you.

God pursues us with His love and longs to fill up those holes in our heart that we mistake for opportunities to build walls with bricks handed to us by an enemy who’s goal is to destroy us.

Do not buy into the lies of the enemy! Do not lose your hope or your joy!  Stay strong in your faith. Take some time to invest in others, be authentic, be willing to share, and be open to accepting others just as they are. Dear friend, you are not alone!

“Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”  Deuteronomy 31:6

We took Ezra with us to Kids Camp last week. They were great about letting Ezra be "one of the kids" as much as he possibly could...including going down the water slide with his daddy!

But Even If

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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! 

One of Those Days

This last Sunday, Ezra struggled. It was as if he was on fire in his own skin. There was little we could do that offered him comfort or calmed him. I have no idea what caused him to have such a hard day. It could have been a number of things…change in the weather, maybe he didn't sleep well the night before, maybe there was a noise that set him off, it’s possible that the tag in his shirt could have been bothering him, the list could go on and on. Many times we are left with no explanation for why he has had a good day or a bad day. Last Sunday was just “one of those days”.

After a full day of spitting, crying, throwing, hitting walls, and writhing on the floor, Ezra ended his day by getting a hold of my dinner glass and throwing it onto the ground where it broken into pieces. I honestly don’t even know if he realized what he had done. I’m not sure that he even noticed me when I corrected his behavior. He seemed as though he was in another world; completely detached from the reality of things around him.

His daddy very tenderly picked him up from his highchair and carried him to his room. He helped Ezra into his pajamas and laid him in bed. Jake laid with Ezra, prayed over him and told him how much he loved him as Ezra continued in his detached-from-reality struggle. And then, Jake zipped Ezra’s bed close and shut the bedroom door behind him. (Ezra sleeps in a special bed designed for children with Autism) Ezra was asleep within minutes. He was a tired little man.

As Jake came back out to the kitchen, I was quietly cleaning up the little shards of glass that covered the kitchen floor as I listened to Grace (my daughter) chatter on about a story from school. The glass went into the trashcan, we put Grace to bed, and we set down on our couch to finally catch a deep breath after a very long day. This is just a part of our everyday life. Not every day is this hard. This past Sunday was just “one of those days”.

Have you ever had “one of those days”?  I’m sure you have. Maybe your “one of those days” doesn't look quite like mine, but we all have days that are hard. For me, it’s what I do about “one of those days” that makes all the difference.

Let me explain. I have learned that you can have “one of those days” that causes you to not want to get out of bed to face another day. Sometimes the struggle of a situation can cause you to want to shut the world away. A common tendency is to instantly begin building walls of protection around ourselves when we have “one of those days”. Throw in a disgruntled attitude with a dash of sadness and maybe even a pinch of self-pity and you get a recipe of allowing yourself to sink deeper and deeper into the gloom of “one of those days.” It is easy for me to do this. Maybe it’s easy for you to?

Here’s the deal. Life is hard. It just is. When we depend on our own strength and resources to survive “one of those days”, we walk away with a little piece of sadness and exhaustion each time. If we continue to depend on our own strength for “one of those days” it is possible to find ourselves in a self-made pit of despair. I can’t go there. I don’t want to go there.

So, what if having “one of those days” meant that it was an opportunity to depend on the Lord more? He is able, friends. What if having “one of those days” meant that I would be in constant communication with the Lord, presenting my requests to Him (Philippians 4:6) and asking for His wisdom (James 1:5)? What if having “one of those days” meant that I ask Him for His peace that surpasses all understanding (Philippians 4:7)? What if all the trails and hardships of having “one of those days” brought me closer to the feet of Jesus? There is peace there. There is rest there.

When my sweet baby boy is writhing on the floor as if in pain, it is the Lord that I cry out to. When Ezra is in a disconnected struggle that I cannot help him to break free from, it is the Lord that offers me peace. When things just seem to be falling apart, when the check book just doesn't add up, when there is sickness, when there is sadness, when I am having “one of those days”, I no longer lean on my own strength. I do not have what it takes. That friends, is because the Lord designed each one of us with a need in our lives that only He can fill.

I hope you are having a great day today. But if you seem to be having “one of those days”, may it become “one of those days” that you run to Jesus. May it be an opportunity to grow in your faith, depend on Him more, and may He shower you with his peace and His grace. He loves you. He longs for us, His children, to run to Him when we are having “one of those days.”

“I love the Lord, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live.”   Psalm 116:1-2

The Reminder

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This was our "happy" for the week.