Diagnosis: Bipolar Affective Disorder

Since Isaac was 10 years old, we entered the world of pharmaceuticals to help treat a number of odd, concerning behaviors that no amount of patience, diet, oils, homeopathics, or various natural therapies were helping. At one point, we were given an ultimatum: do you want to treat the aggression or the inattentiveness? Apparently, treating both, which were both difficult to deal with, was not an option, so we opted for the aggression. After a number of resources were exhausted (schools, doctors, specialty hospitals, special education directors (who incidentally turned us into CPS)) we finally found a psychiatrist that recommended taking Isaac out of school again (we had homeschooled for four years, and put him in school for three months hoping for help), prescribed Depakote and Concerta, and followed up with us every three weeks. We finally could breathe and the aggression calmed down. He was stabilizing and we were seeing the sweet boy that Isaac could be. He was calm, the anxiety was gone, no longer was he running away from home, jumping out windows, setting fires, and attacking younger siblings and me. We continued on the medication and entered behavior therapy for the next three years, with one change to Focalin from Concerta (ADHD medications).

Winter of 2012 we decided mutually with our doctor to take Isaac off the Depakote. Time is a funny thing. I can't remember why we took him off, and apparently we didn't see how Depakote was affecting him as a mood stabilizer, so nobody seemed concerned to ween him off the medication. Four months later he had the chest surgery to correct Pectus Excavatum. From that point on it was a downward spiral. Some things I have learned: special needs kids don't react well to anesthesia, and if you have some kind of mood disorder, anesthesia can send you into a tail spin. In one year, almost to the day, we watched Isaac get less and less sleep, to the point of 3-4 hours a night. He hoarded food and ate all night, despite continuing to look anorexic. He was becoming withdrawn and focused on all the things he couldn't do since the surgery, but at times engaged in reckless behavior, like jumping off 12 foot high walls, crashing his bike, breaking his arm, and using air soft rifles against others. His mood was unpredictable, one minute being friendly and sweet, the next, angry and aggressive. Eventually, all of the family's energy was pouring into Isaac. He had become a vortex that was sucking all the energy and life out of everyone around him. Siblings were scared of him, we didn't have time to comfort injured and offended kids, or ourselves, because he was cycling so fast we couldn't keep up. Medications were added: Lexapro for depression, Trazadone for sleep, Rozarum when the Trazadone stopped working. Vyvanse was switched out for the Focalin after I was back at our doctor's office every month telling him things were getting bad again with Isaac, dosages were adjusted.

Isaac was relentless and I was loosing hope. The night before everything changed, our home teachers had come over with a lesson and I had asked for a blessing for myself and for Isaac. I felt at peace, and most of all, I kept my resolve and clarity just when I needed it.

The morning everything snapped was busy. Ammon was graduating from Kindergarten. The elementary kids had track and field day. Jesse and Isaac were in their final two weeks of school. I thought we were going to have a normal day, even if it was busy, with the end of school year activities. A fight broke out when Isaac wanted to see Ammon's gift bag of goodies from his bus driver. Ammon didn't want Isaac to touch it, but he was pushed away and hurt, so Hannah stepped in to protect Ammon. Isaac attacked Hannah, punching her in the back of her head and tackling her to the floor, knocking her glasses off and stepping on them to break them. All this happened fast. I was going to the bathroom quickly before getting the kids out the door to drop them off, and of course, at a moment when I wouldn't be around to stop things before they got out of hand. Ammon and Hannah were okay, but crying. I was down to minutes to get the kids to school on time. I had to make split decisions.

I called my friend to get the baby from the house. Curtis had left for work, which was 30 minutes away on a good day with no traffic. I had to be at the school for Ammon's graduation at 9:30 but he needed to be there at 9. I called Curtis to come home, it was an emergency. I called the doctor and got an appointment for 10:30 for Isaac, which Curtis would take Isaac to if I wasn't back home. I made arrangements for Ammon to go the friend's house after graduation. The graduation, as much as I wanted to enjoy it and listen to their program and clap and be happy, I couldn't. My stomach was churning. I was shaking with nerves. I hadn't eaten anything and mixed with low blood sugar and extreme stress, I wasn't feeling so great. Curtis got home in record time, Jesse was safe, Isaac acted like nothing was wrong. The graduation was taking forever, and even though they had some yummy cookies and treats, I grabbed Ammon and his certificate and left within 2 minutes of the end of the ceremony. Isaac and Curtis were already at the doctor. I practically rolled Ammon out of the van at the curb and took off again for the hospital.

They had just finished up when I got there. The doctor was making calls. He came back in and updated me. We all agreed that trying to adjust any more meds were out of his realm, and we decided to admit him to a psychiatric unit. The next stop was the ER. It took 5 hours to admit Isaac, find a bed for him in a pediatric unit, take labs, run an EKG, talk with a social worker, doctor, nurse and insurance. At 5:30 we were transferred to another facility. Isaac was happy and normal, a little chatty towards the end of the day, and manic by the time we got to the facility. He acted like a caged animal in the car, and cried before even getting into the building. Once in the building, they separated us right away. He was stripped of his clothes, changed into sweats, shoes removed, all personal belongings removed from him and shown to a room where he sat by himself with a bed, desk and book case. Curtis and I were taken to a room with a case worker who took our history, reason for Isaac being admitted, and told he would be there for 7-10 days.

Isaac looked so little when we left him. He understood why he was there, but was concerned our dog Cookie would miss him, and he was nervous about being so far from home. Maybe all mothers see their child, no matter how big he is, as the little baby they nurtured and coddled. While I knew this is what he needed, it was difficult walking away from him that night. Later, I felt relief, anger, sadness, remorse, guilt, grief, and questioned if this was really my new normal. I had a son in an psychiatric unit.

The next morning things were quiet. Everyone got ready for school without much ado. Still, the house was quiet. I don't think the little kids realized where Isaac was, and Hannah had thought he had gotten in an accident that required him to stay in the hospital. She actually looked guilty when I told her he was admitted because he attacked her. So began the explanations and conversations that Isaac was getting some help, his brain needed to get better, and comforting and consoling all the kids that had long been overdue for them.

The next day we met with the doctor and therapist. They told us Isaac had Bipolar Affective Disorder. Suddenly, a whole bunch of puzzle pieces just fit together. Now we knew why he wasn't sleeping, why he was happy and then mad, why he was aggressive, why going off the Depakote sent us into a tailspin that landed us here, why not all of the diagnosis he had (ADHD, Aspergers, Processing disorders, etc) didn't exactly explain away Isaac's problems. We have a son with a mental illness. What do we do now?

I went home angry. Why?! Why this, why now, why him, why us, why couldn't this have been found YEARS ago?! What does this mean for him? Is he even more dependent on us as an adult than we suspected? What happens when he decides to stop his meds? What does this life look like now? How do I protect my little kids as I get older and Isaac gets bigger? Is that a concern? Is suicide a possibility? There were so many questions and not enough answers.

Isaac was in the unit for 8 days. I realized with him out of the home how much energy and time was spent diffusing situations all day long that involved him. Without him there, things were quiet, getting done, the kids were getting along, tension was at a minimum. I slept for three days, hard, like I hadn't slept in years. I really hadn't because we were ever vigilant trying to keep Isaac and our family safe. We had one night that we met for family therapy and it went horrible. If Isaac was to come home in two days, that night did not give us much hope that he was ready, and nor were we. We went home again, feeling angry and inept. There were still too many questions and not enough answers.

Two days later, they called us again for another therapy session, and announced they were sending Isaac home with us. They took away the Lexapro and Rozarum, started Seroquel, stopped Vyvanse and started Focalin, this time split into doses during the day. If Isaac got out of hand, give him half a Seroquel. The only other advice was to start a level system for modifying behavior. We took him home. Everyone walked on eggshells. I was nervous that we hadn't had time to prepare the kids for his homecoming and that some things needed to change. I was nervous that Isaac wouldn't be able to handle the chaos and noise that came with a house full of little kids. He did great that night. The next day, not so well, and after fighting for 4 hours, I gave him the Seroquel. The next day was the same. Five hours later he could function again and talk with us. So that part was good, but I was not. It was like being back in a war zone after an R&R.

They told us that they felt Isaac would do better in Residential therapy, where he would live on site for 3 months, step down to Day therapy for 3 months, and then step down to Outpatient therapy after that. Our insurance wouldn't pay for Residential therapy. It would cover 20,000 of the 30,000 for Day therapy. Up to this point (and maybe this is a rant for another day), I viewed having insurance as a good thing, like, instead of 80.00 for a visit, we just paid 15.00 for the co-pay. It was doable. We had never had a situation before that insurance dictated what treatment we received, rather than the doctor, but here we arrived on insurance's doorstep. I felt like a beggar. We applied for financial aid, per their suggestion. Meanwhile, the slot for Isaac's Day therapy was slipping away. One week, two weeks passed. I sent every piece of financial paper I could hoping to get the financial aid. It looked as if it was going to be denied.

I spent two straight weeks, 8 hours a day, on the phone looking for therapists, medication managers, therapy options, talked with a social worker and case worker, had the state offer to take custody of Isaac so he may or may not get the treatment he needs if we couldn't find a way to help him, called friends to babysit, watched our paychecks dwindle away for medications, check ups, and gas, called the insurance company over and over to ask for names of potential therapists and what therapies were covered. One night, my stomach crumpled in on itself. This was fruitless. School was out now and the kids were begging to go places. I couldn't let Isaac go because I didn't know how stable he was on his meds, or in large crowds, or both. I couldn't keep track of the appointments and what calls I had made. My house looked like a bomb had exploded because I had spent days on the phone. I couldn't sleep, but I craved it.

A couple of articles turned up around this time. Here is one of them. They talked about the correlation of psychotropic drugs and school shootings, and believe me, I have had my share of people ask if I have tried essential oils, nutritional supplements, diets, homeopathic treatments, and energy therapies in any effort at all to avoid putting my son on psychotropic drugs. Yes, I have, and everyone of them failed. But now I was seeing this article in a different light. What are the parents' stories for these kids? Did they try to get the help for their kids with obvious mental illnesses but got no where because the insurance dictated what they could and couldn't do? Did they call 24 doctors, therapists, and various other people that may have been some kind of help for their child? Did they get told there were no openings for 4 weeks, and did they want that appointment, or did they want to try to find someone more available? Did they get told this doctor wasn't accepting new patients? Did these incidents happen while they were waiting for those appointments? How many of these parents were running on very little sleep, exhausting all aspects of possible care for their child because they were fearing the worst, and then the worst thing happened before they got help?

I finally got financial aid approved, and instead of 10,000.00, we will owe 1200.00. This is doable for us with a large family and with other kids in other therapies and schools to help with their disabilities. Yet again, however, they pushed the date that Isaac starts day therapy to two weeks out, rather than one, making the gap between inpatient care and day therapy 5 weeks. When I thought this was going to fall through, I made arrangements with other therapists, medication managers, horse therapy, and doctors to treat Isaac on an outpatient therapy. 15 minutes before our first intake appointment with a therapist, the billing office called to tell me he got approved for financial aid and could start day therapy now. Now I get to undo all the work I've done for 2 weeks seeking out every possible course of treatment I could find. I don't want to complain, I will take what I can get, even if the treatment is delayed.

Two days later, that stomach pain returned, but this time, it was extremely painful, shooting pain down my arm, into my jaw, down into my legs. I had several symptoms of a heart attack. Great, I thought. Just what we need. I went to Urgent Care, hoping to avoid an ER visit. The EKG came back abnormal. The next day, I looked up gall bladder vs. heart attack symptoms. Just to be sure, I went to the ER. No heart attack, everything was normal, even the ultrasound on all my internal organs. It just left stomach ulcers as the culprit. Not surprising. The last time I was stressed out this bad, I had the same symptoms, and just as I mentioned, time and stress do things to your memory. The same time Isaac was admitted to inpatient therapy, the doctor called me to tell my my hormones were all out of whack and I had the onset of diabetes. Stress will do that to your hormones, and my beloved Pepsi was a double edged sword: it helped me cope, but gave me extra weight and now diabetes. I stopped drinking Pepsi two months ago and there went one of my coping skills. I notice that now I just have no emotions. I have a lot of anxiety, and anger, but I'm not doing things I once enjoyed. There's no time to care for myself, but now I'm forced to find time. I want to be happy, but to be honest, I'm mad it's taken so long to get Isaac into day therapy, and I'm mad I did all that unnecessary work, and I'm mad I lost a little faith in the end there. I'm mad that I can't have a normal life with normal kids and live in a normal house in a bright pink bubble of happiness and perfection. I'm mad I even think that is possible. I'm mad my body is sick and worn out and depleted because of stress and Celiac disease and the constant running of my mind looking for answers and therapists and help. I'm mad that this is such a struggle, not just for me, but for other parents with a mentally ill child. I'm mad that Isaac has all this to deal with. This just isn't fair that he gets 14 labels of various disabilities, syndromes, and illnesses.

I wanted to end this on a happy note, kind of like hoping this would have a happy ending, but it doesn't right now. We are just existing from one day to the next, trying to balance life with medications, sleep schedules and play schedules and dinners and the ever growing mound of laundry. I want to tell you I found my faith, I found peace, and I found a silver lining in a cloud somewhere. Good things HAVE happened, but there is so much that hasn't happened, that has disappointed, that has been a struggle, it's difficult to keep that positivity and bright attitude. My friend said simply the other night, "This isn't fun anymore." It isn't fun. I had hoped with the duplication diagnosis that was the end of this slogging journey, but it's not. I'm just beginning another one. And this one feels so much heavier and harder than the last one. I wake up and put one foot in front of the other, doing things like a robot because I can't just lay down and do nothing. I have never been that way and maybe that's why I'm able to keep going. I know from experience that there will be better days ahead and brighter, happier moments. I'm clinging to the few I get now. I sit outside in the evenings and watch the humming birds and the clouds, emptying my mind, hoping it's enough, hoping I did enough, hoping I can do more tomorrow. I watch my kids play and help each other and hope they are having a happy childhood. I look for ways to simplify my life. I look for the good in every hardship, constantly reminding myself that things happen for a reason, to go with the flow, to turn things over to God, because right now I think He can handle things much better than I can (not that I ever thought I could do better).

One last thought. I have contemplated how Curtis and I have managed to parent these seven kids. I realized, talking with another friend, two things we have been blessed with: Curtis with patience, and I with tolerance.  This could have never worked if either of those things were lacking. How equally balanced we are for the task ahead of us, how blessed we are to have patience and tolerance, how well planned this life is for us. I read a lesson recently about the faith and care of Hannah and her son Samuel in the Bible. I don't think any of us feels like we are really prepared for motherhood before our first child is born, and we certainly don't know what to expect, especially if that child is born with special needs. I could relate to Hannah though, that she didn't feel complete, or that her husband was just enough for her because she needed children to pour her love into as well. She was a faithful woman and I cannot imagine the hardship she endured turning her young son over to God to become a man of God. She went on to have more children and she cared for them as well, and I assume, lived a happy, contented life, but I still go back to her love and concern for Samuel, making sure he had a new coat every year, seeing him once a year, and I'm sure, doubting if she had made the right choice in sending him away, but never wavering in her decision. I pray for steadfastness, not just for myself and Curtis, but for other parents that go through this. This is not for the faint of heart.

I Need a Manual

I like to plan. I'm very detailed oriented. I will make schedules and budgets and chore lists and they look and seem like the most perfect spreadsheets ever made. I call family meetings so we can make sure every single person in the family doesn't have any surprises and they all know what needs to be done. My problem is that I can't implement them. Then I get upset when I can't make them work.

I think I might actually have ADHD.  Honestly, I think it's because I can't just focus on one thing long enough to get it done because there is always some other problem creeping up behind me. I think I have time to paint them living room? No...because while I'm trying to paint, the little boys are in the school room emptying the closet and I can't leave them unsupervised long enough to give all my attention to something so detailed.  It is a rainy, cold day, perfect for working on a rag quilt I wanted to make for Hannah. Wrong. My needle is missing from the sewing machine, because it's a machine and therefore must be dismantled by the child "mechanic" in my house. I know, I'll make a yummy, sugar filled treat for them when they get home from school! Nope. My mixer is missing a part and they ate half the ingredients needed. All the laundry is finished!! GLORIOUS DAY!! Till I walk into their bedroom and find it all over the floor. We are going to have a family outing, and we have to get out of the house before I go insane. This is a 45 minute ordeal to just get out of the house, so I've gotten to the point that I just make sure I count 7 heads in the van. Once we get to the destination, I hear: 'I don't have my shoes', 'Someone's poopy' (Who got the diaper bag? Where is it? Oh, we forgot it at home?!), 'I'm hungry', and 'Someone is crying because this isn't where they wanted to go'. My daily motto: "You can't please everyone, myself included".

Maybe this is more of a symptom of having a large family and not necessarily because of kids with issues.

I wish I had a manual that details these situations out. Maybe multiple choice options come with it but the correct answers are conveniently not published with the book.

SITUATION: Your daughter wants to walk the dogs, but has the wrong kind of leashes to walk them with. All you can envision is the dog seeing a cat and dragging her down the hill, she lets go of the leash, gets scraped up enough that she needs stitches and the dog is running wild through traffic and yards while your other kids chase him down. Meanwhile, your toddler is in the house alone getting into the refrigerator. DO YOU:

A. Go after the dog.
B. Stay with the toddler and hope the older kids don't get run over.
C. Think your daughter's injuries can be treated at home with bandaids.
D. Buckle the baby in the van, run over a bike in the driveway, chase kids down one by one in the van, realize the dog is now lost, give baby wipes to the injured/bleeding kid, and go home to start dinner and hope a neighbor finds your dogs and bring them home for you.

I just realized after writing that, most of it was hypothetical.

This was the real situation:

Your daughter wants to walk the dogs with a friend but can't find the leashes needed to walk a 65lb Blab (basset hound/lab mix) that likes to run and the other dog that really should have been named Nutsy because he thinks everything needs to be barked at and chased. Your older son starts a fight with her and hid the leashes because he wants to walk the dogs himself. It's the end of the day, you're trying to start dinner, do homework, and fill out yet another medical form at the same time. To settle the situation you tell your daughter she can't walk the dogs, but she can go on a 20 minute walk with her friend. This is her reaction: "I HATE THIS HOUSE", kicks a  foot sized hole in the wall,  and slams door followed by multiple objects being thrown at the door. Meanwhile, your kids decide this is the perfect time to go out front and let the dogs loose in the process. DO YOU:

A. Drink a soda.
B. Put them all to bed RIGHT NOW, who cares if they have had dinner.
C. Send older kids to round up the dogs and rain punishments on your daughter that will last until she is 33 or the holes are fixed in the walls, which ever comes first.
D. Find new homes for the dogs.
E. Realize you have lost this battle and YOU go to bed without dinner, because stick a fork in me, I'm done, and they probably already ate half of dinner raw anyway, so why bother cooking.

Yeah...I got nothing.

I need a book that details out all possible scenarios and gives nice little tips along the way, like:

• Remember to put clothes on first thing in the morning so you don't flash the neighbors getting your naked 3 year old off the trampoline while others cry because they were peed on. 
• Hide your bandaids and tweezers in places even you will forget because otherwise they become stickers for decorations and tools for backyard experiments. 
• Learn how to handle hostage situations like the pros! Bedtime Routines...

I know for a fact all this looks so good on paper. Thousands of books have been written on the subject. Thousands of seminars and classes and support groups have been attended because we are all looking for answers. I remember we went to an Autism support group one time and we were besides ourselves trying to figure out how to clip fingernails without needing a backboard, straps and three people. Nobody had any answers. A year later we figured out if we squeezed his fingers really hard till they went numb, we could clip his nails without even a peep. We went back to the support group with that information, feeling pretty proud of ourselves. Everything else around us was a conundrum but we knew how to clip our autistic son's fingernails!

I'll just celebrate the happy moments, count 7 heads at the end of the day, and call it good. One day I will know all the answers, albeit a little late. Maybe I can help with the grandkids. Maybe my kids will never know I didn't know what I was doing? It's all just a wild guess, hope, and a prayer.