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.

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.

So now that I am over the initial shock and sadness, I suppose I am ready to blog about Jerry's diagnosis. After six months of observation by his two ABA's, his neurologist, and then a psychiatric evaluation, childhood schizophrenia has been confirmed. I can't say that we were completely surprised. We had been seeing the signs for some time and there was just no other explanation. Also, two members of John's close family had/have the diagnosis and heredity does play a factor. If the disease is going to manifest itself, it is typical to be between the ages of 15 and 17. Jerry will be 16 in February. Dr. F said some of the classic autism characteristics we saw in Jerry after his diagnosis at 4 could also have been childhood schizophrenia symptoms that we were simply unaware of because of his autism diagnosis...the paranoia, the thoughts that others were talking about him or out to get him or hurt him, plotting against him.

And apparently, if the disease is already present, just temporarily dormant, it can be brought to the surface quicker by the use of marijuana, even for medical purposes. Jerry took medical marijuana for his seizures and mood from February to May 2017. His schizophrenia symptoms surfaced by the end of May when we immediately took him off of the drug. Trying not to dwell on the should have's, could have's, or would have's. Clearly, at some point, Jerry was going to exhibit the signs of the schizophrenia. It just may have appeared later, early 20's possibly. Remembering and clinging to Romans 8:28 and "all things". As an adult with the onset of the disease, we would have had less influence over his diagnosis and treatment. So there's that!

And with this new diagnosis comes mandatory medications. I say mandatory because until you have experienced your child in the prone position of a parking lot crying and screaming, pale and terrified because someone is shooting at him...watched him argue with an owl on the shower curtain for 20 minutes...cry uncontrollably because a voice was telling him he wanted to hurt his brother Jonathan...seen him pace and argue with people who aren't really there, sometimes sleeping no more than 6 hours out of 48...and walked in to check on him in the middle of the night only to see him sitting straight up in bed and wide-eyed with his favorite superhero poster shredded all over his bed because "he wouldn't stop staring at me and bothering me", well let's just say you just haven't walked a day in our shoes. The medications are mandatory, for his peace and well-being, as well as ours.

He is currently on two antipsychotics that are being tweaked to find the right dosage to make his delusional periods (10-12 days per month) more manageable and even less intense. Haldol is an old-school antipsychotic that helps with the delusions and hallucinations. It is also a medication John's one family member had success with and so the doctor felt would be more likely to help Jeremiah as well. Rexulti is newer and helps with the more positive symptoms of depression, not caring for his personal needs (yes, we are wiping him again), and the mood swings.

So far, the results have been positive. These phases show a less catatonic and terrified/paranoid Jerry. He can tell us now what the voices are saying and why he is crying or what is so funny that he is giggling uncontrollably about. Usually, in those instances, the voices have said something he finds funny. Those are less concerning to us than the voices that are mean and threatening to him. I'm not sure it's a great thing to always know what the voices are saying to him now. Sometimes, they are just downright creepy, but I think it makes Jerry feel better to tell us so we can comfort him.

The visual hallucinations have lessened as well. He no longer seems to see people/entities that only he can see. That's good. Another hair-raising experience is to witness him walk up to a corner of the room, look up, and say, "Oh, there you are!"

Anyway, there are the basics and what we know. You all know that I am a researcher by nature. I research or Google everything to find as much information as I can on a topic and possible solutions to the problems it presents us. This has been a challenge with childhood schizophrenia. There is very little out there. There is a shameful, dirty stigma to the disease that no one wants to talk about it, especially if they or someone they love suffers from it. And that's why I plan to blog about it, as I have other challenges we have gone through with Jerry. People, parents in particular, need to know they are not alone. Someone else is going through similar circumstances, feeling the same grief, facing the same fears of uncertainty. I did find a great Facebook page for Parents of Kids with Schizophrenia and that has proven to be a pretty supportive and sometimes encouraging resource. However, it has at times been downright discouraging as well with stories of incarceration, suicide attempts, and long-term residential care. I try to filter those posts through the truth found in Philippians 4:8, which says, finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.

As always, keep us in your prayers as we navigate these uncharted waters. Above are two fairly informational videos about childhood schizophrenia if you would like more information.

It has been a while since I've blogged...on purpose if truth be told. It has been an interesting summer, to say the least, and to be honest I just wasn't ready to let the world know where we were and what we've been going through. Embarrassed? A little. Sad? A lot. 

First off, physcially Jerry has been doing great. He is almost 88 pounds at this point, eating like a horse, and we are not even using the feeding tube anymore. It's still there, in case we need to use it again, but at this point, it looks like he will no longer need it sooner rather than later. Probably still the end of the year before he is free of it entirely, but we can at least see the light at the end of the tunnel. And compared to this time last year? Wow. What a difference a year makes. This time last year we were still detoxing from our two-week hospital adventure.

Mentally and behaviorally? Well, that's another story. As some of you may recall, we were trying Marinol, medical marijuana to help take the edge off of Jerry's anger and OCD issues. We stopped that at the end of May. We just weren't seeing the results we'd seen initially anymore and, after years of medication therapy, John and I have developed a new philosophy. If it isn't working, why give it to him? So we stopped the Marinol.

It's been a long time since Jeremiah was on no medications at all, of any kind. We figured it was time to see where his baseline was...emotionally and behaviorally. And what better time than over the summer when he is in the safety of his own home and surrounded by family who loves him at his best and his worst?

It was about that time, the end of May, when Jerry began to cycle through some strange periods of behavior, the likes of which we have never seen in him before.

One day he simply woke up and wasn't speaking to us. He was speaking, just not to us. He began having full conversations that appeared from our perspective to be one-sided, but to Jeremiah, were very much two-way conversations. His new "friend" even had a name. Jack. During this period, which lasted roughly 11 days, Jerry ate only when we placed food in front of him, cried and laughed randomly (never at us, but at something Jack told him), stared but never really looked at us, and could go for more than 24 hours without any sleep. He paced back and forth, talking, crying, and staring awkwardly at random objects, but seldom us. He also wandered aimlessly during this time and we really had to keep a close watch on him out in public because he would just walk off aimlessly. He followed our lead and directions, but often after repeating ourselves multiple times while he just stared blankly at us.

Then Jerry woke up another day and he was Jerry again...times 10. He was teasing and super aggressive, cursing and hitting, impatient, irrational, and just exhausting and quite literally impossible. Just about the time we thought we couldn't possibly live through another minute of his behavior, bam...delusions and Jack were back.

Each period lasted roughly two weeks, give or take a few days. And we recorded his behavior during each one carefully, as did his behavior therapists who were just as perplexed by this new behavior pattern. We even videoed his more delusional periods for documentation purposes.

By the end of July, we knew it was time to go see his neurologist, Dr. "F." His first suggestion was an EEG to make sure that Jerry's delusions were not the side effects of active seizures. They were not. The day we took Jeremiah into his office for an examination, he was right in the middle of one of his delusional cycles. Try as he might, he could not get Jerry to look at him, but seemingly through him. Jerry talked non-stop to his "friend" as he paced the tiny office we were in, never engaging with Dr. F directly. This was one of the times that Jerry's "friend" was funny and entertaining it seemed as he walked around giggling incessantly, to the point that he drooled down the front of himself.

Dr. F seemed as puzzled as we were, but said that it was very clear that he was having psychotic breaks of some nature and was currently in the middle of one. As much as he knew we had been trying to avoid medication, he strongly encouraged us to consider an antipsychotic, for Jerry's well-being and ours. He also gave us an as-needed anxiety aid for him that would also help to calm him during his times of higher anxiety and aggression. That night we started him on Zyprexa at 10 mgs.

While we have seen less aggression and calmer Jerry during his more difficult stages, he is still cycling. And now, even during those periods when he for the most part seems back to the old Jerry, he still struggles with hearing the voices. It's not so bad when "Jack" is entertaining and causing the giggles. It's almost funny actually. But it's during the times when Jack is threatening and has Jerry scared that are the most difficult to see him in.

We are there now. We saw Dr. F for a check-up today. He wanted to see him before he goes back to school. Scared Jerry showed up yesterday afternoon. He paced all evening last night and didn't fall into bed until 5 am this morning. Then he was up at 8, wide-eyed and still scared. He has been pacing all day, even in Dr. F's waiting room.

When Dr. F. tried to give Jerry a high-five today, Jerry refused and yelled "space!" You would have thought Dr. F was poking him with needles by his reaction to taking his blood pressure and checking his reflexes. He sat in the exam room and cried, at one point telling us that he was tired of "all of it." It was heartbreaking really. Dr. F was very concerned by what he was seeing today and increased his Zyprexa to twice a day. He also encouraged us to use the anxiety aid more frequently, especially when Jerry was as he saw him today, scared and very paranoid.

The picture posted above was during one of Jerry's paranoid periods, when Jack was more of a foe than a friend. We were at the movies and, as you can see by the expression on Jerry's face, some of us were more there than others.        

Jack has made Jerry laugh, scared him, had him in tears, and convinced him once that people were shooting at him. That was in a parking lot when he grabbed Michaela and I who were walking on either side of him, began screaming, and dropped to his knees. We had to practically carry/drag him to the van. He was pale as a ghost and crying the rest of our drive. Once, Jack was "responsible" to moving items around in Michaela's room and destroying others in Jonathan's just to try and get Jerry in trouble...according to Jerry. Needless to say, the kids are encouraged to lock bedroom doors when they are not home now...and sometimes even when they are.

He is convinced actors on the front of movie jackets and characters on the front of books are out to get him and telling him things and he has ripped all of the Marvel posters off his bedroom wall because they were "staring at me" and "wouldn't leave me alone." Today he asked for a bath and then kneeled on the edge of the bathtub naked and screaming because he was too scared to get in. he yelled, "Turn it off, turn it off!" Typically he loves baths and takes two a day, just because. 

As always readers and friends, pray for us. We have placed an alarm on the front door to alert us in the event Jerry tries to go out on one of his up-all-nighters. We are praying for him and over him like mad. We do our best to make him feel safe when he feels threatened by Jack and love him unconditionally when he is having his bouts of aggression.

​In reality, this is brand new territory for us. I can make token boards, reward charts, behavioral modification plans, and follow a medication regimen. I can kiss scraped knees and keep my distance when he is not in the mood to be touched or loved on. I can turn down too loud and remove him from situations that cause him sensory overload. And I have become an expert meltdown detector!

I cannot, however, get rid of Jack, no matter how hard I try. He's a bully whose parents I can't call or force to keep his distance from Jerry. Shoot, I can't even see him. The best weapon we have against him at this point is prayer. And truthfully that's hard for this momma who wants to make it all just go away. So pray with us please. This is uncharted territory...for us, not for God. Pray he will give us wisdom in dealing with this, peace that He has it all under His control and that none of this has taken Him by surprise, wisdom for Dr. F in the best treatment plan for Jerry, his new school year that starts in two days, and a complete and total deliverance for Jerry from Jack.

Thanks guys. Love you all. 

Ok, so I promised an update on Jerry and his behaviors since being weaned off all but two of his medications. It has taken us a while to figure out what is different and then figure out how to put that into words, but I am going to try. So here goes.

His vocabulary seems better, slightly more advanced. He is using words and phrases that I know he has heard before (because he mimics), but we never heard him say until now. And he seems to use them appropriately, which is humorous at times. "Apparently," "for the life of me," "going to be the death of me yet". Those are just a few of the ones we have heard. They always catch us off guard and crack us up.

He has more energy. While he is growing into a typical teenager who doesn't like to get up in the morning, he is definitely less lethargic throughout the day, which has equated to him doing more work in his class at school.

He wants to socialize a little more, and this is not always a good thing because it doesn't matter if it's in the form of asking a complete stranger why they have blue hair or who the naked lady is that's represented by their tattoo on their arm. And occasionally, he will tell someone their breath stinks or berate them for liking the Bucs. Sorry Tampa fans.

That brings us to the sensory issues. He is suddenly super sensitive to smells. My coffee stinks when I make it. Everyone's breath stinks, whether or not he is actually close enough to smell it. The car smells funny. You name it, it smells.

He is more emotional too. He also seems to have more empathy towards others. Instead of laughing at them when they get hurt or something bad happens to them, he sympathizes with them a little. He is crying a lot more now too...real tears. In addition, he is more sorry and upset with himself when he has done something he knows he shouldn't have done. He may seem to not care or laugh about it in the moment, but as time passes, he feels bad. He even says he feels bad because he knows he sinned and Jesus is mad at him. That's new.

Changes in his routine cause cataclysmic meltdowns of epic proportions now. Before, he just rolled with it for the most part. He maybe didn't like it, but he got over it and any tantrum about it was short-lived. The world is now ending when we change his routine. A few weeks ago he had his occupational therapy evaluation at All Children's before school. I took him to school late. I probably should have just called the school day a wash because he had a bad remainder of his day and they said he just could not get into the routine after having arrived late.

He is irrational beyond belief. The cartoon at the top of this post is a perfect example of what I mean. This is probably the hardest trait to deal with quite honestly. One week he likes the shaped macaroni and cheese (Dory, Star Wars, etc...). The next week, it is gross and only the regular noodles taste good. Leftover honey chicken can be cooked in the oven, but not the toaster oven while leftover pizza needs to be cooked in the toaster oven and not the oven.

I am the only one allowed to make his frozen pot pie dinners or his oatmeal for breakfast because it tastes better when mom makes it. If I pack his lunch for school, I cannot put it in his lunchbox because things go stale in there. Even if it needs to be in a cooler, he will not let me use the lunchbox. And all food in containers in the fridge is bad. Leftovers are a no-no. It has to be brand new out of the package for him to eat it. He is usually thirsty after school and so I took him a thermos of his favorite orange juice the other day when I picked him up. I ruined it because I put it in the thermos.

At Subway, even if he is getting the same sandwich as someone else, it has to be on his own paper and no touching the other person's sandwich. John tried to split a meatball sub with him the other day and you would have thought he was asking Jerry to fast for 72 hours. My Lord, those poor Subway employees. He was screaming and kicking the soda cooler and shaking his fist all red-faced at us. He wanted a meatball sub (a 6-inch) and so did John, but they could not prepare the 12-inch sub and then cut it in half. That's just wrong according to Jerry.

This irrationality has us walking on egg shells sometimes because you never know what will set him off. But if you do know, you choose to humor him, no matter how insane the request may seem. It's worth it to avoid the storm.

We still struggle with OCD tendencies...repeating movements and phrases, obsessing over dates of upcoming events and counting down the days until they arrive. This one is an endless battle for him.

Basically, Jerry in the raw (unmedicated) is autistic. Yep. Whereas the medications masked a lot of those tendencies before, we are having to learn how to cope with them for the first time now. All in all, he is no worse than he was on the medications and maybe even a little more tolerable behavior- wise. While we do still have some aggression and cursing, they are nowhere near the level of uncontrollable rage that had him screaming he wanted to chop our heads off before and kill us with a knife. Now he just hates us from time to time and wishes he had new parents. That's not autism. That's teenager.

And we saw Dr. Foradada for the first time today since weaning Jerry and had to confess to him that we did so without his knowledge or supervision. He was totally fine with it.