​Hard. That is life right now. Hard, discouraging, exhausting. And it doesn’t help that the days seem endless. I have maybe an hour or an hour and a half each morning to myself...my quiet time, time in the Word, prayer time...doing all I possibly can to beg God to fill me for what is to come when I hear the thud of his feet hitting the floor as he jumps down from his loft bed. 

And then it begins...

This is not the first hard season we have gone through with Jeremiah, by any means. Truth be told, I have lost count. But this time he is an adult. This time he is taller than us, weighs more than us, is stronger than us. Why didn’t I see this coming? How could I not? It was inevitable, wasn’t it. Surely he would grow up someday. I guess it is what happens when you live each day in survival mode, fight or flight, just struggling to get through one day at a time. One day turns into 365 and a few of those and bam! Adulthood with special needs.

I think we were also caught off guard this time because we thought the worst was behind us...you know...the perils of puberty? Ahhhh, if only we had known! 

So if you are reading this, and the parent of a special needs child thinking that the best is yet to come and this too shall pass, I am sorry to be such a Debbie Downer. Maybe for you, the best really is yet to come and this too really shall pass. They say that, if you have met one kid with autism, you have met one kid with autism. Alas, such was not our destiny.

I could blame it all on the pandemic. I mean, I am sure he is over us telling him no every time he asks to do one of his favorite activities...the park, Universal Studios, Adventure Island, going to our pool, the movies. But the truth is, this started long before face masks, hand sanitizer, and social distancing. 

We were in St. Augustine just after Christmas for a long weekend of family time. At the edge of nearly two years of compliance, affection, and peace that surpasses all understanding in our family, the tide began to change. We were walking on a crowded George Street one night just people gazing and window shopping. I don’t remember what I said to Jerry or what it was about, but I clearly remember the look on his face, the way he drew his fist back to swing, and the tone of his voice when he came at me physically and verbally. It had been such a long time since an incident of this magnitude and yet I was surprised by how quickly my reflexes stored in memory kicked in and I was able to react in self-defense/preservation. Might be a result of PTSD. Once a victim, always a victim? Not sure how that works, but I was as surprised by my reaction as I was to his action.

Since then, it has been a steady decline n behavior and mental well-being, the latter for all of us in the house. He is unpredictable, moody, sullen, angry and scowling much of the time, threatening, and aggressive. He has slammed his head into the table hard enough to open it, has thrown an iPad hard enough at me to cause a concussion, has stabbed at me with pencils, put numerous holes in our living room wall, and my husband is fairly certain he has permanent neck and upper back injuries as a result of being grabbed by Jerry from behind. I wish Jerry was as contactless as Pizza Hut delivery these days.

In addition to the aggression, the hallucinations and delusions have returned and the degree to which the voices have simply tortured him mercilessly is just heartbreaking.

We have tried seven new medications and altered the dosages on all of the meds he has taken so many times I am certain the psychiatrist cringes every time she gets a phone message from us now. We have her on speed dial. He went from nearly two solid years of being on only two medications to now being on five, totaling $3,800 per month. Thank you Jesus for Medicaid. We have permission to give him 2 mgs. of Ativan three times a day as needed just to calm him down. 

For the first time in our lives we have considered group home placement for him. After many emotionally sleepless nights of prayer, we have opted for his APD caseworker to begin the search to find a home willing to take him several weekends a month to at least give us some respite. 

I have always used this platform to share “the good, the bad, and the ugly.” This journey is hard enough without feeling the need to fake it, dress it up and try to make it pretty, or put some cute Snapchat filter on it. 

Yes, I believe God is still in control and that somehow He causes and allows all things to happen for our good and His glory...though I often question how getting beat up by my adult son could possibly be for my good...but God says it is and so I have to believe it. But I am also human and tired and angry and done. Mostly done. I live in a constant state of emotional turmoil, teetering between feeling sorry for him and loving him unconditionally as my son to not liking him very much at all. I recently started seeing a therapist. That poor guy is earning back every penny his psychology degree cost him during his hour with me!

Anyway, if you are reading this and can relate to any of it, I am sorry sojourner. Feel free to e-mail me so I can add you to my prayer list. I have the words and empathy no one else does because I have walked a similar path to yours. Praying just knowing you are not alone is encouragement enough for you to get up and do it all over again tomorrow. Peace and grace...and a crazy unending supply of those promised new mercies everyday.

Just thought you should know.

Ok, so I totally should have uploaded this before my post about Jerry getting baptized, but I just stumbled across this video that I had published to an old media site literally years ago...as you can see by Jerry's age and size. This was Easter after the resurrection egg Sunday school lesson Mrs. Kim taught him. He is so visual and learns best when he can see and touch whatever it is he is learning about. I love how sweet and innocent he is retelling the story in his own words! Precious!!!

I ran across these pictures the other day on my old Photobucket site. I remember this day. Jerry had previously expressed an interest in being baptized. He had seen others go before him and he had learned in Sunday school all about Jesus's death and resurrection.

I talked to Pastor Billy. He spoke to Jeremiah to see what and how much he knew and comprehended about his salvation and being baptized. He felt confident that Jeremiah had as clear a grasp on it as God had given him and so it was decided.

This event and these pictures are what sustained me through some very difficult and dark days during Jeremiah's puberty years when aggression was at an all-time high and we were living minute-by-minute, trusting in God's sovereignty, His will for us as a family, and His eventual deliverance from those times.

Here we are on the other side of those years. I can see how God used them in so many ways in each one of us, especially Jeremiah. I will always wish there had been a different way to learn those lessons. The scars still run deep though the wounds have healed. But I also still trust that God knew what was the best way for us to be refined. And that was one hot fire!

Now I look to Jeremiah's fture and all of the uncertainty there. Will he be able to hold a job and make some money to maintain some level of independence? What will happen to him when John and I can no longer care for him? Will he learn to count money, to read, to do all of the basic life skills  and self-care skills necessary to get along day-by-day? 

And then I stop. Because the truth is, not knowing the answers to all of those questions and more scares me to death. I trust God with his future, but my momma's heart still wants to know that he will be ok, taken care of, loved. But all of that is in the here and now, on this earth, in this realm, in these tents we call bodies.

The only thing (and most important thing) I can have assurance about and that brings me peace when the crazy train of thoughts in my head derails, is Jeremiah's eternal future, his ultimate destiny. And these pictures remind me that it will be in heaven with his Savior, in a completely healed body, with a completely healed mind...no speech impediment, no poor fine motor skills, no developmental delays, no hallucinations, no diagnoses. 

And that...despite my fears, is ALL that matters.

There have been a few.

1. I received a scholarship for college right out of high school for journalism. I always wanted to write, to be a reporter, be a broadcast journalist...travel the world and write about what I saw, the people I met, the foods I tried. Maybe I would try my hand at working for a magazine, writing more entertainment-style articles versus news. Maybe I would write a novel someday (blogging had not yet been invented). I loved to write. I still do. 

Then my circumstances at home changed drastically, and not for the better. I had to work full-time while attending college. The option to stay home and go to school full-time vanished. I lost my scholarship funding while I struggled to pass classes and pay bills, could not commit the hours mandatory to the college's newspaper, which was a part of my scholarship requirements, and in the end, even made the difficult choice to change my major. I graduated almost three years later with my Associate's in elementary education, with an emphasis on special ed. Little did I know then that, more than ten years later, I would have Jeremiah and he would be diagnosed with autism.

2. After a change in pastors and direction, the church that we attended as a family for 23 years began to disintegrate right before our very eyes. It was devastating to say the least. One by one, families walked away. Children's and youth ministries became obsolete, as did women's ministry opportunities. Even all outgoing missions were canceled, shut down, frowned upon. We knew it was time to walk away as well, but the change was so scary, so hard. We had never been anywhere else. We became Christians in this church, our babies were conceived, born, dedicated, and baptized while we were members there. It was all we knew. We were all plugged in, serving, settled, comfortable.

Then God pulled the rug out from under us there and, after much prayer and many growing pains through the inevitability that is change, we landed at out new church home...where they had been praying about and in the infancy stages of beginning a separate but inclusive ESE children's ministry and were looking for a coordinator. Imagine that. Next to homeschooling/homemaking, it has turned out to be one of the most fulfilling roles of my life. And going back to my college circumstances, one I would not have been qualified for had I not changed majors as a result of much disappointment.

3. Then there's Jeremiah. Oh the ways I have grown and morphed, and God has transformed me as a result of being that boy's mother! I think each of us in this house can say that in relation to having Jeremiah as a child or sibling. It hasn't always been easy. Actually, it's never been easy. It hasn't always been joyful, pain-free, fun, or an adventure. Many years have been wrought with sleepless nights, crying in the shower, nursing broken dreams and bruised bodies, missed opportunities, and I am ashamed to admit, a coctail of anger, resentment, and bitterness.

But in and through it all, I can honestly say, I never once questioned the sovereignty of God. I always knew He was on His throne, in control of it all, and that nothing that ever happened to us was outside of his jurisdiction or authority. I have my former pastor and his wife being faithful disciplers to me to thank for that.

I may have wondered about the reality and truth behind Scriptures like Romans 8:28 and Jeremiah 29:11 at times though. How could having to pull the car over to keep from getting into an accident while I am being assaulted physically and verbally by a child in full meltdown mode work together with everything else that was going on in my life for my good? If God's plans were not to harm me and for a future and a hope, then how could He explain the 9-1-1 phone calls we made begging authorities to Baker Act our son just so we could get a respite from him and the autism? Sheesh, for that matter, and more simply stated, how could He explain puberty?!

But then you get perspective. Oh the gift of perspective! God brings you through to the other side of a circumstance and allows you just a glimpse of things from His point of view. He allows you an opportunity to work alongside Him and  re-frame your hurts and disappointments. 

Re-framing a picture requires patience, gentle hands, and the skill of being precise. You can't even begin the process until you have a new frame to transfer the picture into.

You have to be patient while you search for a frame that will fit your picture perfectly. In the meantime, every day that you see it hanging on the wall, you long for that new frame to be found and envision what it will look like once you find it. You can almost feel your fingers running across the smooth, unsplintered edges of the new frame. It's hanging straight and secure from it's hook attached firmly to its back. You squint, imagining the glare of the light off the shiny new, streak-free glass. You randomly check resale shops, thrift stores, flea markets, garage sales, and even your neighbors' trash at the curb after they spring clean...all hoping for that unveiled treasure you know is out there just waiting to be discovered.

Finally, you find your frame. It's perfect. You could not have ordered one made specifically to fit your picture more beautiful than this frame. Now it's time to extract the picture from its old worn frame and transfer it to your new one.

You carefully flip the old frame over on your lap, gently prying up the prongs on the back of it to release your picture from the dilapidated home that once was good enough to care for it. You have to be careful and gentle because the frame is old, worn, has cracked glass, water-stained and wood rot edges. Even the hanger spins aimlessly on the back, its glue disintegrated to the point that it can no longer serve its purpose to display the picture proudly on your wall.

Finally, you free the picture from its old home. You remove it ever so gently from the frame so as not to scrape it along the rough edges or sharp fractured glass on its way out. You can re-frame a picture, but you're no artist and you know you are not qualified to re-paint the picture itself.

You cleared a section of table in front of you to lay the picture  on until the new frame has been prepared to receive it. You removed the clutter and even used a damp cloth to wipe down the table's surface, following it up with a dry lint-free towel to keep your picture from getting wet or picking up unwanted particles it will take into its new frame with it. You even washed your hands before this step in the process. With the old frame now picture-free, you replace it's backing, not quite as gently as when the picture was still in it, and you set it off to the side, now turning your attention to the new frame.

As carefully as you removed the picture from the old frame, you transition it into the new one, careful not to touch the glass inside the frame and leave your oily fingerprints behind. Happy with the positioning of the picture in the new frame, you replace its backing, secure the prongs in place, and hang it back on the wall where it once hung. You step back to admire the view. What was once an eyesore and an perceived embarrassment upon entering the hall is now the focal point and sure to be the topic of discussion for friends who come to visit, old and new.

Re-framing. It's what God wants us to do to our disappointments, our circumstances that we'd rather we didn't have to go through, question God's reasoning for, and can't see through the thick darnkess to the light that is most certainly awaiting us on the other side.

And God doesn't ask us to do the re-framing on our own. He is the Master builder after all. What's a little re-framing a picture job to Him? Easy peasy. 

God has a plan for just what He wants us to learn and how He desires to transform us in our difficulties. When we think He is taking to long to rescue us from them, He is fully aware of the exact moment He will, and how much longer our refining process needs to take our stubborn and rebellious hearts to be complete, the dross to be fully skimmed from the surface of our hearts. He only asks that we be patient. 

When He does begin the process of restoration in our lives, He does so gently, knowing that after all we have just gone through, we are fragile and frail, emotionally, mentally, and sometimes even physically. He doesn't just rip the dried blood-soaked Band-Aid off so to speak. He soaks it in some grace and mercy to loosen its edges and make the transition a smooth one for us. We may think we want Him to just snap His fingers and zap us out of our dark seasons, but He knows that we have lived in them for so long that our eyes have adjusted to the dark and it would be painful to simply flip the switch on full wattage without letting us adjust slowly to the new reality He has waiting on the other side for us. He is gentle.

God is precise. He doesn't waste one ounce of the pain He just allowed in your life to slip out of His hands as He re-frames you into your new likeness, one that resembles His Son a little more closely than the one that used to be comfortable in its old frame. He makes sure you fit in His new frame for you. But He didn't just find this frame at some half-priced noon hour yard sale. Oh no. He custom designed it just for you. He fired and melted the sand particles to make the very glass He encloses you in now. He sanded the frame and crafted the prongs of His love that will hold you securely in place. And He Himself is the hanger that will hold you in this new place, even as this frame will also begin to age and show signs of wear and ultimately decompose. Why? Because re-framing is not a once-and-for-all process. It is a continual transformation into something more beautiful, more Christlike, more usable and moldable and God-glorifying.

And remember that old frame that, once the picture was removed from it, we set it off to the side? We didn't throw it away. Neither does God discard of the old frames He so gently removes us from, no matter how dilapidated they may be. They serve a purpose. They remind us of how far we have come and how far we have yet to go. They have a perspective purpose in God's Kingdom. Keep them. Don't wish them away or try to forget them or block them out.

I said earlier that we work alongside Jesus as He re-frames our hurts and disappointments. I just told you what it takes to re-frame a picture and God's role in re-framing ours. So what is our role? What is our job in all of this? Simply put, it's faith and trust. We trust in our Master builder and put our unabondoned and unhibited faith in Him to make beauty from ashes (Isa. 61:3), to restore the years the locusts have devoured (Joel 2:25), and to transform us into a new creation through the process of sanctification (Romans 6-8). We trust. We have faith. And when God beckons us over with his wagging index finger and wait-til-you-see-what-I-have-for-you smirk on His face to the telescope of perspective aimed His purposes and plans for us, we take a peek. Then we obey whatever He asks of us on the path to those purposes and plans, no matter how far away they actually are in light of the magnification of His telescope.

The years between 13 and 16 were some of the hardest and darkest years of my life with Jeremiah. Puberty was hard on him, on all of us. I can still look around and see evidence of its effects...a patched hole in the wall where his foot went through, a reset diamond on my wedding ring after a stainless steel mug shattered the original setting, a medicine cabinet full of antipsychotics and antidepressants that never worked and still need to be disposed of. There are even emotional remnants, feelings of fear and dread that another similar and even more devastating season of darkness lies ahead as we enter adulthood with him. It's a daily battle to give them to my God who has always been faithful to carry them for me when I let Him.

BUT...PERSPECTIVE!

• Had we not gone through those formidable four years, we would not have received the diagnosis we did when we did that, once he was properly treated for, resulted in much anticipated and longed for peace for our family.
• One of my nieghbors might not have felt comfortable reaching out to me for help with her daughter who is struggling with anxiety, depression, and middle-school hormones.
• I would not be able to wrap my arms around another neighbor with a son on the spectrum smack dab in the middle of puberty and tell her, with all blessed assurance as a sojourner, that this too shall pass.
• I would not have taken the professional crisis management class to learn holds, defense techniques, and transportation procedures for people in crisis situations to keep Jeremiah from hurting himself and others.
  • Had I not taken the PCM class, I would not have heard about the roles of RBT's...registered behavior technicians. 
  • Had I not heard about RBT's, I may not have recognized the God-given desire to become one. And prayerfully, God will use the perspective He has given me as Jeremiah's mom and autism and puberty survivor to empathize with other parents still bumping into the walls of darkness looking for a hand to guide them in the direction of the only source of Light.

Trust the process. Have faith in the Processor. Re-frame your perspective. Be still and know that He is God.

Remember when your parents used to say that to you? Well, Jerry's been hearing an awful lot of that as of late.

We are not sure if it is the medication or just the nature of the schizophrenia, but Jerry has lost all interest in "things," all things. He could care less anymore about monster trucks or Monster Jam. He doesn't bug to plant in our garden anymore. Remember his dinosaur phase? We ran out of Pinterest dinosaur activity/game/craft ideas! Ninja Warrior, obstacle courses, Legos, board games, books...you name it. He could care less. We bought him some of his favorite things for Christmas and guess what? He unwrapped the paper from them and they are still in their store packaging under his bed! He has never even opened them! And before Christmas, we took him to Toys 'R Us and told him to pick out whatever he wanted for his gifts. He picked NOTHING! Everything we bought him was simply based on what he USED to like and obsess over.

His psychiatrist says it is a natural part of schizophrenia, the lack of interest. I see posts on my Facebook parents' group all the time of kids diagnosed with the same disorder sleeping on the couch, on their electronics, disinterested in and diengaged from the world around them. 

Well, I have officially had enough. I think the breaking point was when he lost interest last season in Buddy Baseball. He played for more than 10 seasons and loved every minute of it. He would drive us batty (no pun intended) between seasons and over the summer, ready to go back. You can see how much he enjoyed it in the first picture above. Look at that smile! The picture below  that first one is the first game of this season. He's a benchwarming spectator people! He is watching his friends play, his old buddy Jen be a buddy to someone else for the first time ever, and his brother coach and sister be a buddy as well. Breaks my heart! But it started last season when he wouldn't stay on the field or in the dugout for more than 15 minutes of any game. He would just walk off field and say, "I'm done." And no amount of threatening or cajoling or bribing could get him back out there. Believe me, we tried.

I refuse to let this be the rest of his life. Sometimes, you just gotta do what you've gotta do! And you may not always want to, like it, or be happy about it. But it is what it is. Suck it up buttercup. Harsh, I know. But I miss my engaging and over-the-top-excited-about-stuff son!

We have a new routine we're working on. Besides taking care of his own physical needs like teeth-brushing, butt-wiping, and showering...and doing some household chores like sweeping the stairs and taking the garbages out...,when he gets home from school and on his days off, he has to somehow engage with us. Pick a game to play, go grab a coloring book, get the Legos, get a book we can read together...you get the idea. It's not, "Do you want to...?" It's not optional. Forced fun? Maybe. But we see it as necessary to not lose him any further into the abyss of aloofness. Crazy isn't it...having to make your child have fun? Ugh!

Not forcing Buddy Baseball however. There is the rest of the team to consider at this point. The commissioner of the league said that Jerry could go out on the field anytime he wanted to to take part in all of part of a game. We have put his old team shirt on him the last two weeks, but so far, he has not been interested. We'll see what the rest of the season brings.

God really seems to be working on me in the area of prayer lately. It started over a year ago when I was involved in the Armor of God study by Priscilla Shirer. From there, I read her book called Fervent, which was ALL about serious, specific, and strategic prayers for each area of your life. Then John and I went to deliverance counseling with Jeremiah where we learned about the effectiveness of prayer against strongholds from our pasts, and ancestral bonds. Last summer we took a class on spiritual warfare and learned the importance of prayer in the spiritual realms and how to pray like a warrior on the battlefield, as if our very lives depended on it, which it does of course.

But my most treasured resource for learning how to become a woman on her knees comes from my long-time mentor, friend, and one of the most prayerful and godly women I have ever known. Her name is Lorraine. When I met Lorraine, I was an overwhelmed mom of one. LOL! Oh, had I only known back then what I know now! Anyway, I was interested in a homeschool conference about two hours from my home in the Orlando area and, though I had never met Lorraine, a mutual friend of ours asked her if I could spend the night at her home to attend the conference without the added expense of a hotel room. Lorraine said yes...to this complete stranger. Being more of an introvert, I was probably more apprehensive about staying in someone's home whom I had never met than she was in having me stay there. I tend to be awkwardly dorky in conversation and in general when I meet new people and am trying to find common ground and begin conversations that lead to familiarity and make me feel more at ease.

Lorraine however welcomed me into her home as though we'd been friends forever. There was nothing awkward about it. After a delicious home-cooked meal and showing me the room she'd prepared for my stay, Lorraine did something I will never forget as long as I live. She asked if she could pray for me. Well who in their right mind turns down prayer? "Sure," I said. And then she excused herself for a few minutes and came back with a basin of warm water and a washcloth.

Lorraine didn't just pray for me. She got down on her hands and knees in front of me, removed my socks and shoes, and washed my feet while she prayed the most heartfelt and intentional prayer over my being a wife, a young mother, a homeschooler, and a daughter of the King. I will never forget that moment of humility, Lorraine's heart of servitude, and the kindness with which she washed my feet and prayed for me. 

So when God really began convicting my heart about my lackadaisical, ritualistic, and irregular prayer life (at best), I reached out to Lorraine. I am thankful that, over the years, God has allowed her to remain a part of my life, even after he moved her family to Alabama. Though I wish I saw her more frequently and got to spend more time gleaning from her, thanks to technology, she is never more than an e-mail or phone call away. She checks in on me often and asks for specific requests and how Jeremiah is doing so she can continue to pray for me in the most personal and intentional ways.

Lorraine was more than happy to share some of her resources and prayer habits with me. One of those is Face to Face by Kenneth Boa and focuses on praying the Scriptures, which is such a powerful, effective, and personal way to communicate with Jesus. It helps you memorize Scripture too!

Anyhow, God has been graciously working on and through me to become a more prayerful woman. And the blessings reaped from spending that time with Him daily have been worth being up before the roosters! Don't get me wrong, I still have a long way to go, and will probably never come close to where God wants me to be, but I am enjoying every step of the growing-closer-to-Him-daily process.

I found that I am prone to wander when I am praying unless I have written out my prayers by topic and am strategic to read them and meditate on them right there in front of me. I have prayers on my faith, my identity, my purpose, John, the kids, my past, gratitude, my pressures and passions, my relationships, peace, and many others. Obviously, I can't feasibly read through each of my prayers every single day and so I have a calendar and pray through a different one each day until I have prayed through them all...and then I start over.

Recently, I felt like I needed a specific prayer strategy for Jeremiah. He is included in my prayers for the kids of course, but I just felt like, with all of our challenges and circumstances with him lately, he needed his own prayer. I spent a few days jotting down notes of things to specifically pray about for him...as they would pop into my mind or we would actually experience them with him. Then I got out my Bible and researched a few Scriptures to go with my prayers for him and began writing. 

I struggled with sharing this prayer. It is very personal and displays a level of vulnerability for me in allowing others to see what lies in the depths of my heart as a mom of a special needs child. But then I thought there may be other people out there who also struggle with not knowing exactly what to pray and how for their children in similar circumstances. And I also know that many of my friends and family reading this will read this prayer, hide a few of my requests away in their hearts, and use them to better lift our family to the Father in the future. So here it is. Thank you for being a prayer partner with us as we continue to navigate our way through all God has called us to in raising and teaching and loving Jeremiah.

Lord Jesus, you are the ultimate Creator of all, including my son with special needs. He was not a mistake, a creation gone wrong, or an accident. Jeremiah David Bertic was created by You and for You. You formed his inward parts, knit him together in my womb, and I praise You that he is fearfully and wonderfully made (Psalm 139:13-14). For this, I thank You Lord.

Because of sin, none of us is a perfect creation. We all have our weaknesses, our thorns in the flesh. Jeremiah is not autistic or schizophrenic. He is Your beloved child who suffers from autism and schizophrenia. They do not define who he is. They are merely his struggles, his thorns.

Father I pray that, while my mom’s heart desire for him is to grow and develop and learn things like reading and writing and arithmetic and self-care skills, more than that, my deepest desire is that Jeremiah would know who You are in the very depths of his soul. In whatever way he is capable of learning and understanding, I pray that You would reveal Yourself to him, make Yourself a very real presence in his daily life. Fill him with Your Spirit. Give him the ability to understand what You have done for him, how you have saved him and redeemed him by Your blood shed on the cross for his sins. Then Father, when he grasps that truth, teach him how to glorify You in thought, by mouth, and with his deeds. Grow in him a grateful and worshipful heart towards his Savior. Let all who see it be blessed and witnessed to because of the testimony that is his life…his triumphs, his struggles, his weaknesses, his ability to overcome through Your great power.

Jesus, cultivate in Jeremiah the fruits of Your Spirit (Gal. 5:22-23). Fill him with joy, regardless of his circumstances. Show him how to love unconditionally and selflessly. Give him Your peace Lord that surpasses all understanding. Use it to guard his heart and mind in Christ Jesus (Phil. 4:7). Give Jeremiah an ability to exhibit patience, both with himself and with others. Give him a kind and gentle spirit Lord. Root goodness and a desire to both ‘be and do’ kind and good in his heart. Let faithfulness to You be foremost on his mind and in his heart and in all he thinks and speaks and does. And while self-control does not come naturally or easily to Jeremiah Father, I pray You will give him the supernatural ability to control his emotions, his physical urges and temptations, and his tongue.

Lord, with Jeremiah’s lack of understanding comes the risk of this world taking advantage of him, exploiting him, hurting him. I pray Your protection and mighty warring angels around him, both in and out of our immediate supervision as he grows and seeks more independence. Expose those who have impure motives towards him and weed them from the garden of his life. Break every ungodly soul tie connected to him and bring people into his life that You want there and move out those that You do not.

Instead Father, bring into Jeremiah’s life people who will encourage him, guide him, teach him, be patient with him, love him unconditionally, and extend your grace and mercy towards him. Bring him friends Father.

Lord, I pray for a heart of obedience and submission for Jeremiah towards all of those You have placed in authority over him. Weed any rebellion, hidden or otherwise, out of his heart God.

God, I know You have a purpose for Jeremiah, a plan. Since before the foundation of the world, You predestined him for that purpose. You plan to prosper him, not to harm him, to give him a hope and a future (Jer. 29:11). Use my son Lord. Use him for Your glory. Use his struggles to build perseverance, develop character, and bring hope (Romans 5:1-5). Use those struggles in him, in the lives of those closest to him, and even in those observing his struggles from afar.

Lord, when Jeremiah hears voices that only he can hear, sees entities that only he can see, I ask that you would bind them with your blood and render them inactive in his life. Expose the spirits of theft trying to rob him of his mind, his soul, his physical well-being. I command every spirit associated with these voices and entities to be bound and dispatched to dry, uninhabited places. Restore to Jeremiah instead spiritual, physical, emotional, and mental well-being Jesus. Remind Jeremiah that no weapon of the enemy formed against him will prosper for greater are You who is in him than he who is of this world (1 John 4:4). Teach Jeremiah how to suit up, wearing the whole armor of God: the helmet of salvation, the shield of faith, the breastplate of righteousness, the belt of truth, his feet shod with the preparation of the gospel of peace and taking up the sword of the Spirit which is the Word of God.

I plead Your blood Jesus around the property line of our home and Jeremiah’s school, above the roof and below the foundation, over every doorframe, window, floor, door and wall. I pray your blood over the pillow where Jerry lays his head to sleep at night.

I plead the blood of Jesus over the streets adjacent to my home and his school, and over all of our vehicles, in which we spend so much of our time. I ask that You dispatch mighty warring angels to stand guard around our home and his school. Fill our home with Your Holy Spirit and hold back every demonic force from entering. Where we have inadvertently brought things into our home that are harmful for him spiritually and not in line with Your Spirit Lord, reveal them to us. Help us to cleanse our home of any ungodly objects or possessions that could carry with them demonic strongholds or ties.

I pray Lord for Your mercies to be new each and every morning, regardless of the circumstances of today (Lam. 3:22-23). I blow it often as his parent Lord. Remind me that every second is an opportunity for a fresh start, a repentant heart.  Help me to learn from the past, but not dwell on it (Isaiah 43:18). I want to strain toward what is ahead and press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus (Phil. 3:13-14).

Lord I pray for wisdom for the doctors and specialists who are treating Jeremiah. Give them clear direction and Your insight into how best to help him. Use the medications as tools in Your hand, instruments to restore him to a state of wellness and wholeness, a state in which the medications are no longer needed. Ultimately, You are his greatest physician Jesus. Never let us lose sight of that truth.

Give us as his parents the ability to discern fact from fiction, truth from lies when speaking to doctors, specialists, teachers, therapists, etc… You made us his parents. You chose us for him. Therefore, You have equipped us with the insight and wisdom to know what is best for him, right from wrong for him. Remind us to tap into You first and foremost, not books, friends, so-called professionals, or other well-meaning but flawed resources.

And Lord, when the guilt and shame wash over me in waves and the doubts and fears concerning Jeremiah’s future come crashing down resulting in sleepless nights, remind me that You are sovereign, omnipotent, and omniscient and that fear and guilt are not from you, but from the enemy of my soul. Remind me that for those who love You all things work together for good, for those who are called according to Your purpose (Romans 8:28). Remind me of the futility in worrying about tomorrow because of Your sovereignty (Matt. 6:25-34). Help me to focus and train my mind on things that are true, honorable, just, pure, lovely, commendable, excellent, and praiseworthy (Phil. 4:8). And while I am Jeremiah’s mother Father, never let that soul tie become an ungodly one, wherein I am finding my joy or peace only in times when he is joyful or peaceful. My identity is found in You and You alone Lord. My emotional and mental well-being cannot be reliant upon his, ever.

Remind us that the sufferings of this present time are not worth comparing with the glory that is to be revealed to me (Romans 8:18). And this life and all of its trials are but a vapor (James 4:14). Your grace is sufficient for us. Your power is made perfect in weakness and so let us boast all the more gladly about our weaknesses, so that Your power may rest on us (2 Cor. 12:9). Keep grumbling and complaining about our circumstances and wallowing in the self-pity that results far from us Father. Give us Your peace, even in the midst of our tribulations because You have overcome the world (John 16:33).

Put others in our lives, sojourners who understand our struggles Lord. Give us a unity, an ability and desire to pray for and encourage one another. Do not let isolation and loneliness in our circumstances separate us from the herd Lord, where we can be easy targets of prey for the enemy himself. The enemy is the author of the de’s and dis’s: despair, discouragement, discontentment, despondency, disagreements, disappointments, disbelief, disheartened, destruction, destitute, deteriorate, demonic, deception. Instead, keep us grounded daily in Your Word and put a new song in our mouths, a song of praise to You (Psalm 40:3). Help us to hold firmly to the word of life (Phil. 2:16). 
Let us never become so inwardly focused on our own circumstances and trials that we forget that You left us here to disciple and minister to others. It’s not all about us! Give us the ability and heart’s desire to look for opportunities and ways to comfort others in the same way You Yourself have comforted us (2 Cor. 1:3-4). This is our mission field, like it or not! Let us embrace it joyfully and be good stewards of the fields whose seeds You have left us to plant, watch grow, tend, cultivate, and even harvest (Matt. 9:37).

Protect mine and John’s marriage Lord. Marriage is hard enough sometimes without the added stress of special needs. We can become so engrossed in Jeremiah’s needs and focus so much of our time and attention on him that we forget to cultivate our own love. We forsake our time together as a couple, growing together in our love for You and each other Lord. Make our marriage a priority, a strong foundation built on Your truths and able to sustain the harshest of winds and floods (Matt. 7:24-27). 

Likewise, remind us that we have other children besides Jeremiah. Give us meaningful, intentional quality time with each of them individually. Give us the strength to love on and pour into them daily because they too are our children given to us by You as arrows to fill our quiver (Psalm 127:4). 

As a family Lord, let us never allow circumstantial roots of anger, bitterness, resentment, unforgiveness, or jealousy towards either Jeremiah or a ‘typical’ family find fertile soil in our hearts in which to grow. Again, Your will, Your way, Your timing…all perfect for our family, both as a unit and as individual members of that unit.

Remind us Father that we are more than conquerors through You who loves us. Neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from Your love in Christ Jesus our Lord (Romans 8:37-39).

We will not fear, for You are with us. We will not be anxious, for You are our God and will strengthen us. You will help us and uphold us with Your righteous right hand (Isaiah 41:10).
​
Lord, I pray all these things for Jeremiah, myself, and my family in Jesus’ precious name, amen.

I started reading this book a while ago during my quiet times. Each week reveals another of God's names and then the Monday through Friday devotionals taught on that name break it down further into bite-sized pieces and teach what it means for us as we walk out our faith in Jesus in our every day lives. My plan is to just keep starting it over as I end it and, prayerfully, someday I will have a better grasp and understanding of God's character as revealed in His names.

​Anyway, I am back at week one and the name for this week is Elohim...God, Mighty Creator. It "contains the idea of God's creative power as well as His authority and sovereignty." In today's reading, Ann focuses on the God who never changes in our world that is ever-changing.

If there's one thing most of my close friends know about me, it's that I hate change. I like routine, structure, predictability. I am not spontaneous, spur of the moment. I don't like surprises, even ones most would enjoy. Hate may be a strong word at this point. I will admit that, as I have gotten older, and as God has put friends in my path who example what it means to embrace change and "roll with it," I have become more tolerable of it. Still not in love with it, mind you! And don't know that I ever will be.

And life with Jerry is ever-changing, ever-evolving. I've said it before and I'll say it again...there is never a dull moment with him in our family. Meds, no meds...likes Scooby Doo, Scooby Doo scares him...loves baths, won't get in the tub...doesn't eat anything, eats us out of house and home...has meltdowns in the car, is he even in the car right now?...is motivated by stickers and Minion toys, stickers are stupid and what is a Minion? It's a crazy and wild ride on up in here! In fact, you'd think I'd be a lot more tolerable of change than I actually am. Hmmm, maybe that's a lesson God is using him to teach me. Possible. There are a whole lot of lessons to be learned in mothering that little man!

Anyway, back to today's reading. Ann says,

Imagine for a moment that you live in a world that never changes. In this world civilizations never rise and fall, the weather is constant, children don't grow up, and people never change jobs. In this world, the same old television shows run year after year. (Ahhhh, I was imagining this and smiling at the daydream of it all. Ok, maybe not the children don't grow up part, but everything else? Works for me. Especially if the TV shows were I Love Lucy, Andy Griffith, and Mash and the weather was always fall.)

Then Ann continued...

Wouldn't it bore you to death? Without the right kind of change, there would be no growth or development, no hope, nothing whatever to aim for. No one would ever talk about discerning God's plan for their lives nor would anyone strive to fulfill their God-given potential because there wouldn't even be a word for "potential." We know that to be human is to be subject to change.

Ugh! Another thing I hate? Admitting I'm wrong! But I am, clearly. Ann's right. It would be boring. Ann goes on to point out that we are still not everything God intends us to be and so constructive change is necessary. That goes for me. It goes for you. It goes for a little boy with autism who currently goes from lucid and joyful to delusional and paranoid in the same day.

But you know what the best news is? God is NEVER-changing. He is already perfect and everything He needs to be. "Change could not possibly improve Him." He always was and He always will be. And here is my favorite line of Ann's. Ready for it? "HIS ATTITUDE WON'T CHANGE DEPENDING ON HIS MOOD, DEPENDING ON YOUR MOOD." Chew on that for a while! Relieved? I sure am!

In the end, no matter the changes I face, we face...welcome or unwelcome...the God who is the same yesterday, today, and forever can steady our rocked worlds. He is so stable and strong, we can lean on Him forever. Amen!

I have come to the conclusion that being a special needs parent equates to being a missionary. Here's a list of the how's:

#1 -  Being a special needs parent is not an occupation, but an identity. It's a lifestyle. There are no days off, no vacations, and unlike missionaries, there are no furloughs to raise support. There are reprieves, an hour here or there...maybe even six in a row if your child is in school, but even then, your are spending those hours working on behavior strategies, scheduling doctor appointments, reviewing for IEP meetings, and making sure your pantry is stocked with Lucky Charms and chicken nuggets...your child's main staples.

​All this to say that, as a family, we are very much looking forward to the Joni and Friends Family Retreat at the end of this summer. There, we will be encouraged, loved on, given a chance to rejuvenate and recharge, provided with counselors and other parenting sojourners navigating this journey, and just given a chance to have some "typical" family fun. Can't wait!

#2 - Missionaries don't get a typical paycheck. And neither do special needs parents. Missionaries get support and donations from community organizations and churches, but it's not a salary. We have been humbled to receive similar support over the years for Jerry. We have received donated iPads, grocery store gift cards when he was gluten free, help with his school supplies, etc... There have also been friends sensitive to the needs of our other three kids that have stepped in to offer help with them when Jeremiah has been so demanding...emotionally, physically, and financially.

#3 - Missionaries are not always appreciated for their work by the people they are serving. This is the third way being a special needs parent is like being a missionary. I wonder some days if Jerry will ever fully appreciate all that we have sacrificed for him...the sleep, the finances, the hopes and dreams for him that may never be realized, the time. Probably not. I don't think he's capable of wrapping his brain around such things. And what about his brothers and sister? The things they can't do, places they can't go, friends they can't have over for fear of them being exposed to cursing and flying objects. And in Jerry's world, nothing is fair, we are mean, and those two things give him reason enough to tell us he hates us daily...with no idea at all how much his words tear at our hearts. Sometimes it's hard for us to separate the autism from the son. But we do not labor for the rewards this side of heaven. Neither do missionaries.

#4 - Being a missionary can be lonely at times. Number four in how being a special needs parent is like being a missionary. It can definitely be lonely sometimes. Sitting at therapy, missing out on a fellowship event because going is not in Jerry's beat interest, staying home to accommodate Jerry's routine or schedule while the others go out. These are all moments when being a special needs parent can be lonely. That's why it's so important to have relationships with other SNMF's....special needs mom friends. They get it and provide camaraderie when it's most needed.

#5 - Special needs parenting and missionary work can be physically dangerous. I think enough of my FB and Instagram posts have proved this one to be true of parenting special needs kids too. While I may not pay the ultimate price with my life like Jim Elliot did, I have been kicked, bitten, scratched, slapped, punched, pushed, head-butted, and had things thrown at me...some accidentally, but most intentionally. And then there is the sleep deprivation. I wonder if my health insurance would re-evaluate covering me if they knew just how dangerous a job special needs mom could be. 

#6 - The typical World doesn't get it. I don't mean any disrespect by this, but just like we can never truly understand the life and sacrifice of missionaries unless we become one (and I mean leave our comfortable lives to live in a foreign country where we know no one), the typical world cannot truly understand or even appreciate our roles as special needs parents. "Why don't they just spank that kid? He just needs a week under my roof and he won't act like that anymore. Did you hear the language coming out of that boy's mouth? Can you believe that mom just stood there and waited while her son writhed all over the floor in a tantrum? Why do they have a fast pass reserved for people with disabilities? No one in their family looks handicapped." Until you have shadowed us for a day or unless you personally know someone who parents a special needs child or works with them, you just don't get it.

#7 - Their service is not one size fits all. The final way special needs parenting is similar to being missionaries is that our service is not one size fits all. Because of cultural and socioeconomic differences, a missionary in Kenya serves people differently than a missionary in China might.
Similarly, what works for one ASD child may not work for another. When it comes to discipline, food, therapies, or medications, all special needs kids respond differently from one another. No two special needs kids are the same just as no two people have identical DNA.

What motivates or makes them tick today may be entirely different tomorrow too. No two kids are the same and, even with the same kid, no two days are the same. And that is what makes special needs parenting so special!

​And that's how parenting special needs children is akin to being a missionary!

So if I could patent some inventions that I have brainstormed as useful to special needs parents at one time or another, here are what they would be. 

First, soundproof and shatterproof glass in family-owned vehicles. Why can’t they install one of those divider windows you see in limousines between the front and rear seats of a minivan? I mean, really? You could lower it on good days and keep it raised on bad ones. There would be a button on the dash that you could choose to press depending on whether or not you wanted to hear what was going on in the back of the vehicle and at what volume. And of course, all of the glass would have to be shatterproof for those aggressive moments when feet are flailing and projectiles are soaring through the air.

Next, I would invent a remote control to pause meltdowns, rewind to try and change what caused them in the first place so as to prevent them altogether, and if all else fails and a meltdown is inevitable, could fast forward to get past the tantrum as quickly as possible. And remote would have a mute button, for obvious reasons. Genius.

Third, a machine similar to the one that produced the Everlasting Gobstopper in Willy Wonka. On one end, you entered a code representing your child’s DNA, molecular structure, biological make-up, everything. Maybe the end was big enough that your child could actually be drawn through the machine on a conveyor belt, all the while the machine assessing and interpreting everything about them. Then it would whistle, bang, toot, pump up and down, harrumph, simmer, and shoot smoke out the top of its chimney. With a final ding of a bell, out the other end of the machine would pop a pill. The pill would contain every single ingredient necessary to supplement your child’s diet to make up for wherever they were genetically lacking. There would be no trying medication after medication to rule out what works and what doesn’t. It would be the Jeremiah pill, the Alexander pill, the Zachary pill, the Angie pill…whatever your special need’s child name is, just fill in the blank. It would be designed specifically for them and meet every single deficiency and need they had – mentally, physically, emotionally, developmentally, etc… Then I think I would go into the machine as well because, well, I’m sure I’m lacking somewhere too!   

Next, I would invent a filter that could be fitted into the back of a child’s throat and removable only by a parent or medical professional. The filter would catch all of the ugly remarks, bad words, and insulting, hurtful comments before they could ever be heard by others. There would just be silence in place of where those things would have been heard. Come to think of it, I know some adults, myself included, who could benefit from this filter. Hmmm, I may be onto something here.

Last, I would invent a micro electrode device that was installed in all babies at birth – in their buttocks. Parents would be given a remote keychain, similar to the one that unlocks your car doors. As the child grew and made poor choices and misbehaved, you could press the button on the remote and a tiny jolt of static electricity, similar to what you feel when you drag your feet on carpet and then touch something in the winter time, would course through those little butt cheeks. Just a reminder that they are being watched, a warning to change their attitudes and/or behavior. And it would never be able to be turned up or made any stronger either so that abusive and cruel parents couldn’t use it as a torture device on their kids. In fact, you could only press the button so many times in a day.

That’s all. That’s what I’d invent. 

Blogging. I've been doing it for years. Took a break for a while. I used to blog about our family life - vacations, home schooling, the kids, what we were up to, recipes. It was a great way to keep out-of-town family updated on what we were doing and kind of like keeping a journal for myself I guess. 

The I created a blog called Teaching Jeremiah where I blogged about raising Jerry, our youngest son diagnosed with autism. I shared challenges with his behavior, his therapies, home schooling him, his fight with epilepsy, whatever.

Then I blogged as youth leader of our middle school kids the lessons we learned and the events and activities we were involved in. That was a great time for me.

Then I stopped blogging. Not really sure why. Didn't matter much anymore I guess. Life was happening all around and in so many different ways with four kids and youth group and church and being married. It was hard enough just to be a part of it all, much less blog about it. 

And lately? Well, I haven't really been sure about my role in any of it anymore. I stepped down from leading youth group because of demands at home and just a change in season for us. My kids are practically home schooling themselves now as high schoolers. My oldest is an adult and so my role with him has morphed into this new relationship as two people co-habitating under the same roof, me trying to give him his independence and freedom while still trying to be his momma in little ways that he hopefully won't find too annoying. It's strange  when your purpose starts to evolve and change and you go from one season of your life into another that is so unfamiliar.

I have spent a lot of time over the last few years trying to figure out my "thing", my purpose, my ministry, what God wants me to do next. I still believe part of that is wife and mom, Christian and friend - always will be. But it doesn't feel like that's entirely all of it. And not that those things aren't enough and fulfilling in and of themselves. Because they are. I just have always felt like there was more I needed to be doing, and doing purposefully. And there has been. Like I said - home schooling, youth group, even working my essential oils business.

Lately, as in the last year or so, my entire world seems to have revolved around raising Jeremiah. I know it doesn't. I won't let it actually. He is one of four kids, remember? But he does demand a great deal of my attention and energy just the same. And I've noticed something else too. I am not the only one whose world has been rocked, turned upside down, and affected by this Tasmanian devil of a little boy. Those other three kids? That husband of mine? Yep. All of us have been affected. As have his teachers, his therapists, our friends and other family members - though not to the same degree.

For the most part, I have tried to just "deal" with him, raise him no differently than my other three kids, check parenting him off my to-do list each day so that I could get down to that other purpose for which God has called me to...you know, the one I am still unsure of, but know has to be out there somewhere. And the more I "deal", the harder dealing becomes.

So I resign, not in dealing, but in purpose hunting. Know why? Because I think that purpose has been right here in front of me all along.

Our family doesn't just live with autism. Autism and Jeremiah permeate every single fiber of our existence. If affects where we go on vacation, what we eat for dinner, how we sleep, who we invite into our home, what invitations we have to turn down or can graciously accept. In other words, like it or not, autism, special needs - this is my purpose. At least right now, in this season of my life. My role is to navigate through it all with John, Jonathan, Michaela, and Benjamin - holding hands, loving each other through each messy day of it, hopefully learning and growing from it all in the process. To use what we have learned having Jeremiah in our family to comfort others in the same ways God has comforted us. To be real and honest...no matter how ugly that reality can sometimes be. Intentional. Inspirational. Transparent.

And my role is also to be Jerry's advocate, his voice, his cheerleader, his teacher, his disciplinarian, his mom who loves him unconditionally...that last part being the hardest to do if I am being completely honest. Because he is unlovable sometimes. That's truth. It's not just about teaching Jeremiah anymore. But it's about loving him, fighting for him, raising him, protecting him, understanding him, and most of all, SURVIVING him!

So welcome to my new blog, my new purpose - for such a time as this. It's time I stopped chasing rainbows and began blooming where I'm planted. Some days that looks like between the cracks of two slabs of pavement. Some days it's in a field of green as far as the eyes can see. Some days it's amongst so many weeds and thorns, I can't catch my breath. Some days it's in a drought and on others I feel well-watered and nourished. Each day's forecast shouldn't matter as long as my roots run deep and I keep my face towards the Son. I know that. That knowledge doesn't always make it any easier out in the elements, but knowledge is power, especially when it leads to wisdom.

​Thanks for stopping by. I hope my posts give you a glimpse into our world in a way that's encouraging, but still real. I'm not going to sugarcoat what we're going through or how we got through it. That means this blog might seem different from my others. No rose-colored glasses will be worn when I post here. But prayerfully, the hope we have, the grace we see, and the mercy we experience in the midst of it all will be evident too.