Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
Ok, so you are probably thinking it's some state-of-the-art techy calculator, or maybe a durable pair of sneakers. Nope. Brace yourselves. It's a lunchbox. Say what? Not just any lunchbox mind you. But let me start with why a lunchbox is so important in our house.
Jeremiah suffers from hangry often. He is triggered by hunger and thirst in ways that make Dracula look like an innocent bystander at an all-you-can-drink blood bank. Seriously. Before anyone knows why he is behaving the way he is, he has lost his gold star day and temper and then it's all downhill from there. I wish I was exaggerating. And he eats a lot! This is a good thing considering two years ago he was 60 pounds and not eating at all with a G-tube, so hear me when I say that I am not complaining. But let's face it, six hours is a long time to be away from a refrigerator or pantry when you are a teenage boy.
So a lunchbox is supremely important in our house. And I believe we have found the best one on the market for the money. And there were tons out there to sift through too. Dear Lord, just search lunchbox on Amazon and be prepared to scroll for thrity minutes or more. Michaela agreed with our choice and bought herself one when she graduated college and started working 10-hour shifts.
What's so great about it? Well, besides the fact that it's under $20, it's a rectangle! What's with most lunch bags with the oval bottom. Tupperware is square people! Leftovers don't fit in the bottoms of those bags without turning them sideways and risking them spilling, or worse yet, risking your peas running into your chicken and your green beans touching your mashed potatoes. Heavens no! LOL!
Second, it has a secret insulated compartment in the lid, a pouch on the front, and a netting pouch on the back...lots of room. And you can use the adjustable strap (that's not made for only vertically challenged people), or you can remove the strap and carry it by the handle on top.
Then there is this zippered pouch between the top and bottom compartments that holds the ice packs so your napkin or sandwich doesn't get soggy.
But the best part is how big the bag itself is without Jerry looking like he is carrying travel luggage to school. Here are the before and after pictures of packing his lunch inside.
If you can't tell how much I packed in there, here is what all is inside.
And if we hadn't been out of mini cans of soda, cheese sticks, and yogurts, those would be in there too! LOL! By the way, I know this looks like a lot of food, but Jerry doesn't eat breakfast before he leaves in the morning and so they let him snack when he gets hungry around 10 am. Then lunch is at noon and more snacking usually happens around 1:30! And he gets so thirsty! I pack him a mini can of soda, a 16-ounce bottle of Crystal Light, a 12-ounce greet tea, and a Capri Sun (or two). And it all fits in this bag with his lunch and snacks!
Best of all (I know I said that before), it's washable. I probably washed this bag every other week last school year. Jerry just throws his dirty utensils back in the bag when he is done or doesn't close his half-eaten bag of chips before throwing them inside and zipping the bag shut. It's always an adventure cleaning out his lunchbag after school (queue Psycho movie music).
It was the perfect bag for him starting high school. While he is not opposed to character lunchboxes and still likes Paw Patrol and Scooby Doo, this lunch bag is for big kids. It also comes in 8 different colors. Micky got a purple one.
Anyway, that's my idea of the best back-to-school supply this year.
Today is day three of the new school year and, so far, we are off to a great start. His first two days were gold star days.
We had an awesome summer, probably the best we've had since Jeremiah was very little. Usually, the countdown to summer vacation is a tearful, anxiety-filled one, wondering how I will get through 80-something days in a row of 24/7 behavior issues. But not this summer. We went to Adventure Island swimming, we went to the movies, we did some gardening, played some games, had a bunch of lazy days at home, and I have to say, I was genuinely sad to see him go back that first day. I missed him!
He was ready though. By August 1st, he was obsessing over the countdown of days until open house, pacing the house and talking to himself about who his teacher might be, who would be in his class, what I would pack him for lunch, if quiet time would still be a thing this year, etc...
On our part, there was some apprehension for another reason. I can't lie. We were praying and hoping that Jeremiah would be accepted into another school, for various reasons. We applied for a different school back in April and even toured the new school, John and I at least. We were thrilled. They were more like a real school, with classroom transitions, real textbooks assigned to each student, testing to see where they are at academically and track their progress, teachers with Bachelor's or Masters in education, an actual lunchroom that makes and serves hot lunches daily, a library, a computer lab, tons of school clubs covering a wide array of student interests, a sports program, and PE, art, and music, all of which he currently does not have unless a volunteer just happens to come in and teach it to the kids sporadically. It's just more well-rounded. They also go year-round with only about 6 weeks of summer, understanding the importance of continuity and routine for special needs kids. And during that six weeks of summer they have a half-day camp-style program for the kids that keeps them learning while they have fun and is taught by newly graduated education majors at out local university. To make up for the rest of the summer, they have a fall break, two weeks at spring break, and three weeks at Christmas.
And did I mention that it is FREE?! Jeremiah's current tuition is a whopping $17,000 a year! That's more than a calendar year's tuition at the University of South Florida for perspective.
Most importantly, this other school has a transition program that far exceeds the one where he is now. At age 18, Jeremiah will begin transitioning from school into a real-life job skill training phase that will last until he is 22. At the school he is currently at, the adult students remain in the same academic classroom learning the same curriculum as their younger school-aged peers for the entire school day. Once a month or so, they are taken on random field trips to our local Publix to bag groceries for an hour or two or to a locally-owned restaurant to learn how to serve customers and bus tables.
At the school we tried to get Jeremiah into, they have a transition program that starts before the kids even turn 18. We saw their job skills classroom and it was amazing. They have a full-service coffee-shop where the students learn to barista and the teachers and other school personnel can place orders to be filled. The kids even learn to work the cash register and credit card machine as the school employees pay for their drinks. They also have their own eBay store and they teach the kids how to list things for sale or auction and then how to mail the items once they have sold. They have a sewing center for kids who like to sew to learn how to make garments or repair them. This is all in addition to a completely separate culinary classroom where kids interested in cooking can go and learn that skill as well.
And the students don't sit in a typical classroom after they turn 18 and graduate high school either. They have a transition building where the students spend half of every school day. There they learn job etiquette, basic job skills, social skills, financial independence skills, and so much more. Notice I said they spend only half the day in that classroom. That's because they spend the second half of every single school day at an actual job site working supervised. And the school is paired with the sheriff's department, Moffitt Hospital, a local coffee shop, and more so that the kids have options. Now can you see why we were so stoked?!
But alas, we are not the only ones who know this school is a Godsend. There is an insane waiting list to get in. Jeremiah was in the lottery for two of their three campuses in May, but he did not get selected. He is now on the waiting list and, whenever a spot opens in his grade level, another lottery will be held for those students waiting to get into that grade level. So we wait and take it one day at a time until then, knowing that, for whatever reason, God has chosen not to open that door yet. The fact that we could even consider this new school is a miracle in and of itself really. Years ago, before we considered Jerry's current school, we looked into this other one. But Jeremiah's behavior was so out-of-control and unpredictable, we feared it would not be a good fit for him. Now, that is not the case at all. Praise God!
Here's the bottom line. No one, absolutely no one can be responsible for your child's education other than you...the parent...whether they are typical or special needs. You are their best educator and their best advocate. Period. So what to do? Well, we are working on that. I can live knowing that he does not have routine lessons in art, music, or PE, but I feel obligated to do something about where he will be and what he will be learning after he turns 18. I want him to be as independent as he possibly can be and teach him skills for life that will set him up for success in the future long after John and I have passed. Again, we are working on that very proactively right now and have some great ideas in mind and will reveal them when we are further along in the planning process.
For now, we are past the disappointment that he is at the same school this year and resigned to it being God's will for such a time as this. Instead, we will make the most of it, help his teachers anyway we can, support the school through our volunteer hours, and by golly, have a good attitude doing it (most days). LOL! God's still working on me with that!
We were thrilled to know that his teacher this year is Mr. Edward, the para in his room from last year. Mr. Edward is the uncle to one of Michaela's friends that she was homeschooled with and who was in several plays with through our local homeschool co-op. He has a great plan for this year, has a child with special needs himself, will challenge Jeremiah and expect more from him than Jeremiah thinks he is capable of, understands that they are entering young adulthood, and most importantly, he is a CHRISTIAN. God is good. Here are some pictures of Jerry's new classroom and with Mr. Edward and his para Ms. Ashley.
"There is an old story about a wise man living on one of China’s vast frontiers. One day, for no apparent reason, a young man’s horse ran away and was taken by nomads across the border. Everyone tried to offer consolation for the man’s bad fortune, but his father, a wise man, said, “What makes you so sure this is not a blessing?” Months later, his horse returned, bringing with her a magnificent stallion. This time everyone was full of congratulations for the son’s good fortune. But now his father said, “What makes you so sure this isn’t a disaster?” Their household was made richer by this fine horse the son loved to ride. But one day he fell off his horse and broke his hip. Once again, everyone offered their consolation for his bad luck, but his father said, “What makes you so sure this is not a blessing?” A year later nomads invaded across the border, and every able-bodied man was required to take up his bow and go into battle. The Chinese families living on the border lost nine of every ten men. Only because the son was lame did father and son survive to take care of each other. What appeared like a blessing and success has often turned out to be a terrible thing. What appeared to be a terrible event has often turned out to be a rich blessing.
Been a while. I know I say that at the start of most of my blog posts. I think it is a case of things going so well right now that I just don't know what to blog about. The struggles are far and few in between at this moment. At this moment. I am all too aware that could change in a nanosecond. I have learned that the hard way time and again. But honestly, since December or so, things have been very different. Different in a good way.
The cursing has stopped. The physical aggression is gone. There have been no hallucinations or delusions since January 26th. He is talking again, to us and about everything. He is talking about past events and things he remembers. He is singing along to the radio in the van. He can't stop talking about VBC in a few weeks. He smiles a lot, sleeps less during the day, and has been so compliant we even have him doing chores and some summer school. He may verbalize that he doesn't want to do it, but as he says that, he is doing whatever we asked him to do. He is looking forward to Monster Jam in August and has even showed interest in some hobbies he has liked in the past.
It has been a new normal for us, a nice new normal. He has been on the same medication combination for months now and holding steady. His psychiatrist is confident in this treatment plan and believes we will only need to adjust dosages as he grows.
I feel like I have been holding my breath for the past six months waiting for it all to fall apart and things to go back to the way they had been for so many years and I am just now slowly beginning to exhale. Relief. There is no other way to explain the feeling. It has made me want to do absolutely nothing but sleep...not to escape anymore, but because I don't think I ever realized just how exhausted I was from the past few years of circumstances with him.
I remember back when things were at their worst with Jerry behaviorally, physically, and emotionally. Really, in the big scheme of things, it was not all that long ago. But I remember people looking at our lives and commenting, "I just don't know how you guys do it." I thought that so absurd, like we had a choice. We were not doing anything extraordinary. We were merely surviving. Now, in this season of being able to breathe and reflect, and rest, I look back and wonder, how did we do it? How did we persevere? How did we survive? How did we make it through each day, each episode, each battle...walking through the minefield of meltdowns and always on the brink of the unknown, flinching every time he raised his voice or fist? Each day definitely holding enough troubles of its own.
Grace. That's my only answer. Unmerited, undeserved, unwarranted...minute by minute, day by day.
I remember the devastation of Jerry's new diagnosis of schizophrenia last summer. I remember thinking, really God? This too? Why? But looking back I realize that, had we never received that blow, we never would have discovered this treatment that has brought us to where he is now. He is on the exact same medications that have worked for family members suffering from similar diagnoses. Only makes sense that it would work for him. Can't help but wonder, if he had been diagnosed with the schizophrenia earlier, how much of the past few years could we have avoided. And then I remember that God is sovereign and so the answer to that is, "none." while there are things that have happened over the last few years that I in no way understand or can see the reason behind, ultimately I don't need to. I just need to trust that it's all been for our good and God's glory, somehow, some way. And that's that really.
So no what? Well, the rebuilding begins. I see new signs of life in the relationships between him and his siblings. I see trust being rebuilt, hearts being mended, scars fading, and lessons being learned. We are witnessing the Lord restore to us the years the locusts have eaten.
We even planned a family cruise vacation in December! In a million years I never would have even entertained the idea of quarantining myself on a floating vessel with no way to escape except by flailing overboard! Instead, we are looking forward to it, all of us.
And I am not saying that we do not still have moments and are not still enduring struggles with our gift from God. We are. They just don't take our breath away as often and our joy is not as easily diminished by them as it used to be.
We are still working on self-care skills that I worry he will never master sometimes...wiping, teeth-brushing, putting his clothes on right side out and not backwards. And puberty? While I have been assured that exceptional needs girls and menstrual cycles are far worse, exceptional needs boys and the body parts that seem to have a mind all their own are not much fun either. I assure you. And poor Jerry really has no idea what is happening to his body. Some of it "tickles" and some of it is downright irritating...like body hair. We have been told that "it itches." Ben came downstairs the other morning to Jerry on the couch, pants down, scissors in hand. He was giving himself a "haircut" in hopes that it wouldn't bother him anymore. Poor Ben! Oh the things he will never be able to unsee! Jerry manscaping! We reiterated how dangerous it is to have scissors that close to certain body parts and assured him that, if he cuts all of the hair off, it will itch even more! True story. You can't make this stuff up. Tim Hawkins material.
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.
I have to share what I really feel like God has been clearly teaching me the last week or so. I will start with the Refocus Retreat I went on with my church last weekend.
The retreat was open to anyone and even couples could go. I really wanted John to go with me, but one of us always has to be with Jerry, at least when we are talking about being gone for more than a few hours. He went on the men's retreat in October to the Keys and so I guess this was my turn so to speak.
Our church family is still relatively new to us, even though we have been attending services there for nearly three years now. We have plugged in and serve in different places so that we are connecting and meeting new believers in our new family regularly. Our church is bigger than the last one we attended and so we can go every week and meet someone new it seems!
I am not much of an extrovert, not like John. He has an easy personality about him. He can just meet someone, strike up converstaion with them, and they are instantly friends. Me, not so much. Meeting new people can give me anxiety. I am always a little more than awkward during first introductions and those early get-to-know-you-better conversations.
It's not surprising then that, the week leading up to the retreat, I wavered between, "I can't wait for this weekend!" and "Why did I sign up for this? Is it too late to back out?" But God knew my heart and He got me there. He reminded me that I was new at my previous church once too, albeit decades ago. He also reminded me that He led us to this church for a reason and we have a purpose there as we worship beside His other children. Then, because I was still not convinced (I am really stubborn like that!), God gave me a practical "help" for the weekend. The day before I was to leave, one of the ladies' I had gotten to know only recently through a mutual Bible study we were doing, texted to ask if she could ride with me because her friend's plans had changed.
Needless to say, the drive was relaxing, it was fun to get to know her better, we stopped for lunch, and overall just had a great time of fellowship for the hour and a half it took to get to the retreat center. Without her along, I probably would have spent that time in dread over the event...picturing myself eating alone, sitting by myself, and feeling like an outsider overall. Totally the enemy, but my mind would have inevitably gone there just the same. I disclosed some of my anxieties about the weekend to my car companion. She, by the way, is an extrovert. Thanks to her, I was introduced to many wonderful new people all weekend long and always had a friend to sit/hang out with. God is good and my fears were totally unfounded.
But that was just a prelude to the meaning behind this post. Friday night at the retreat, I was back in my room settling in and I texted John to see how everyone was doing. He told me that Jerry had spent the better part of the evening paranoid and scared and talking to people not there. We had not seen an episode since the beginning of January. It was the longest stretch between episodes and I was beginning to relax, thinking the medication concoction and dosage was finally the one he needed to be on to "stay with us," at least until his next growth spurt.
I let myself get discouraged. I started questioning God. I got a little angry and a lot sad. Here we go again.
The next morning, our first session at the retreat was on a Bible study method dating back to 30 A.D. and taught by a very sweet man who was a pastoral care missionary all over the world next to his wife for 35 years. And here is the passage he chose for us to breakdown and study that morning:
The Faith of a Canaanite Woman (Matthew 15)
21 And Jesus went away from there and withdrew to the district of Tyre and Sidon. 22 And behold, a Canaanite woman from that region came out and was crying, “Have mercy on me, O Lord, Son of David; my daughter is severely oppressed by a demon.” 23 But he did not answer her a word. And his disciples came and begged him, saying, “Send her away, for she is crying out after us.” 24 He answered, “I was sent only to the lost sheep of the house of Israel.” 25 But she came and knelt before him, saying, “Lord, help me.” 26 And he answered, “It is not right to take the children's bread and throw it to the dogs.” 27 She said, “Yes, Lord, yet even the dogs eat the crumbs that fall from their masters' table.” 28 Then Jesus answered her, “O woman, great is your faith! Be it done for you as you desire.” And her daughter was healed instantly.
Seriously. Of all passages.
Naturally, I did what anyone desiring to blend in with the paint on the walls would do when amidst a room full of people she was just meeting and getting to know...I cried! Ugh! My small group leader was very sweet. She could tell that I was not ready to share what was on my heart and let me just sit and listen to everyone else as we went through the study.
But God was working on me. Oh, that I could have the faith of that Canaanite woman...who didn't just ask once for her daughter's deliverance and healing (even after the dsciples asked to have her sent away). No. She stayed and she pleaded, she begged. She admitted her underserving status to even have Jesus acknowledge her, let alone grant her request, but she knew by faith that He alone could grant it and so she persisted.
Have I given up? Have I accepted the doctors' diagnosis that schizophrenia is irreversible, not curable, progressively debilitating? Have I put my faith in them and their prescriptions over my God who, with and through Him, all things are posible? Ouch.
I had to be back at church Sunday morning to teach and so I missed the last breakout session at the retreat, but God had His hand in that as well. I made it back in time to attend the first service before I had to teach during the second. Pastor Mark spoke on Nehemiah 4:1-14, where the Jews were so fearful of Sanballat and his threats to destroy them in the process of their rebuilding the Jerusalem wall, that they were ready to lay down their tools, throw the towel in, and retreat.
Pastor Mark reminded us that fear keeps us from God's best. We need to pray...hard, be prepared for the doubts that will creep in, put a plan of protection in place, and post the power of God at the front of our fight.
I will admit that I am fearful for Jeremiah's future with his diagnosis. I think any momma would be. But I can never stop praying. The doubts will come. Undoubtedly, so will the set backs. It has always been three steps forward and two steps back with my sweet boy. But my plan of protection has to be staying grounded in God's Word, not forsaking my quiet time with Him, and learning the true discipline of praying without ceasing...no matter the answer or outcome...no matter how long it takes...even if my heart's desire for Jeremiah is never realized this side of heaven.
This is not my fight. It is God's. I am just along for the ride and have to continually open myself to all He wants to teach me and how He wants to grow me through it...remembering always one very important truth. It is ALL for His glory. I may not always understand the how's and why's of that statement, but I don't need to. I just need to believe it, to have faith that it is true.
I have seen Priscilla Shirer live several times. She is an inspiring and encouraging speaker of the truth. For those of you who don't know, she is Tony Evans' daughter, which explains a lot! Anyway, it had to be five or more years ago that I saw her at an event in Orlando with a group of ladies from our church, and the message she shared on Ephesians 3:20-21 was so memorable and powerful that I have never forgotten it. With the popularity of YouTube in recent years, I have occasionally searched for the message using key words from her presentation in hopes of finding it to watch again. FINALLY, Going Beyond Ministries posted this video in 2017! I watched it again this past week and was reminded of how great a God we serve and how infinitely small we are and think when it comes to His ability and desire to do immeasurably above and beyond all we can ask or imagine in each of our individual circumstances. Carve out some quiet time (about an hour's worth), grab a cup of coffee, curl up in your favorite chair, and prepare to be changed by her message...God's message to us.
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.
Just thought I would share this great YouTube I was shown. It is Anderson Cooper wearing a listening device that mimics the voices someone with schizophrenia hears. It is very interesting and educational in and of itself and really opens my eyes to Jerry's struggles with Jack. It makes it easier to understand why he is so unresponsive at times too...too many "people" trying to speak to him and gain his attention all at once. I love Anderson's honesty towards the end of the video when he is describing how he feels after this experiment. Sad, yet informative on so many levels.
Just a fun and unique way to give you a glimpse into our 2017 as we "press on toward the goal to win the prize for which God has called us heavenward in Christ Jesus."
I am a Christian. I am a wife. I am a mom. I am an author. In that order.