My son can melt my heart even when he's causing heartache

Today my son was supposed to meet a new psychiatrist.  That turned out not to be a problem getting him out of school due to his being suspended yesterday for punching his teacher in his junk.  Yeah.

So, we had a psychiatrist we liked who had him pretty stable and had seen him through two hospitalizations.  But, my ex, who barely shows up and has no clue what's going on, despite being provided all the testing and documents, decided to throw a wrench in everything.  We've been dealing with custody issues in court for a year and a half.  The only straw he could grasp at was to claim I'm overmedicating the children.  He never got a second opinion, as he told the court he needed time for or went to any doctors' appointments or even spoke to any doctors... until he called Billy's psychiatrist and told her he disagreed with Billy's ADHD meds (that he's been on for 4 years) and that he had 50/50 decision making power and he wasn't going to give him the meds anymore.  The doctor understood the situation and sided with me, but felt she couldn't legally prescribe the meds anymore and furthermore didn't want to be in the middle of this argument and quit being his doctor.

I'd hoped the court stuff would be done in December, so our primary care physician gave us three months' worth of meds and I'd hoped we'd get it settled and could go right back to her.  But, court proceedings were continued and i tried to go back to our PCP but was seen by another doctor in the practice who lectured me about it being my responsibility to find a psychiatrist and only giving us a month's worth of meds.  I'd found some leftover meds of a lower dosage from when we upped the milligrams a few months back to get him by in the meanwhile.  Even 10 milligrams difference, we can tell there's a huge change.  Children's Mercy only takes patients who also have a physical ailment.  So, i set up this appointment with a doctor that had been recommended to us by our insurance liaison.

There was something about the guy i didn't like, but it boiled down to him saying he couldn't take Billy as a patient unless we had sole custody or Billy's dad not only signed authorization saying he was ok with the treatment but actually came to the appointments and participated in the treatment.

Our lawyer had his dad in for a deposition a couple of weeks ago and he denied ever telling the psychiatrist those things and said he believed the only thing wrong with Billy is ADHD, though ironically, that's the meds he didn't like.  He admitted he's never gotten a second opinion, gone to any of their appointments, or contacted any of their doctors.  Yet, he's ruined all of Billy's chances to get treatment.  He claims to be concerned about the meds, but this has left Billy with no one to monitor his meds since August.

Billy has 9 more of the low dose ADHD meds.  Even if the case were wrapped up tomorrow, we couldn't get in to a doctor that fast. His other meds, antidepressants and antipsychotics that keep him from self-harm and violence against others will run out, respectively, in March, April, and May.  If nothing happens to intervene, his behavior at school will deteriorate as will his grades, he'll likely start threatening or attempting suicide again, or start more violence towards others and we'll end up with another hospitalization.

Needless to say, I've been angry and upset ever since.  Fury at first, then sorrow.

Billy brought me a coloring page of the Incredible Hulk and had written on it, "you're as strong as Hulk.  Don't be sad."  On the back, he'd drawn a diagram where no pills equaled unhappy face and unhappy face equaled both of us.  Then he wrote off to the side "we don't want that, we want this."  Below, his diagram showed unhappy face does not equal us and smiley face equals strong.  He also brought me a drawing of "supermom."  He told me that even without meds, he'd try to be good, even though it's hard (though no amount of mind over matter can power through bipolar disorder).  He hugged me and it made me cry that he was trying to cheer me up when I'm fighting for him.

A Broken-Hearted, Weary Mama

I'm staring at this blank screen with all these thoughts and feelings and yet I am thinking of a word that is seldom used to describe me...speechless.  I am usually capable of spilling my feelings via the written word much more aptly than by saying them out loud.  And yet, here I sit, not knowing where to start.

My son is on my mind.  He's been on my mind constantly for...well...I can't remember when he WASN'T on my mind.  I've written previous posts about him here and there and everywhere and even more.  We're right in the middle of evaluations at this point.  I quit his psychiatrist because he was condescending, offered no practical help, and the things he said didn't hold up when I researched them.  I had planned to stay with him until we had another recommendation, but when they tried to charge me $50 to write a prescription, I had had enough.  Our primary care doctor is a wonderful Christian man and is covering Billy's meds until we find a new psychiatrist.

We finished K.U. Med's testing and they concluded that he did not meet the criteria for autism (though in my heart, I really believe he does) and suggested he may have something called intermittent explosive disorder.  Again, people are only addressing the behavior, but if the behavior were the only problem, we'd have figured out something that would have worked over the course of the past several years.  WHY is he acting out?  There has to be a reason, a cause.  They recommended cognitive therapy, told us that blood work should have been done every year with the meds that he has been on (which we were never told), and advised us to monitor Billy's spacing out because it could be seizures.  We have been to two evaluation appointments at Children's Mercy Hospital and go back next week for a parent-only meeting to go over their results.  I am praying that this evaluation will yield more help and answers than K.U.'s did, but in case it doesn't, I've already been in contact with M.U. and we'll drive to Columbia for more testing if we have to.

In addition, I filed a complaint with the state about the school not complying with my request for an IEP and that is pending.  Since Billy's behavior has continued into the school year and I am not backing down, they are beginning evaluations for an IEP now.

I am thankful for meeting a couple of wonderful ladies who have autistic sons and have been encouraging me and giving me pointers and direction.  I also contacted MPACT, which is a parent advocacy group.  I have communicated with them via email and will be speaking to a representative on the phone tomorrow.  She has already given me great suggestions and gotten me spurred into action and organization.

I began compiling folder after folder of paperwork: Billy's daily school behavior sheets, his 504 plan, communication between me and the school, evaluations and diagnoses records, schoolwork that I did with him over the summer that showed his deficiencies academically, etc.  She also got me to request further records from the school.  My records are now about six inches thick.

In my research and compiling records, I was looking for behavior sheets we had filled out for Billy's former counselor to prove that this has been a long-term problem.  I couldn't locate those sheets--I am afraid they may have been lost when our basement flooded.  So, I had the idea to look through some old emails to friends and family to see if I could find any record of Billy's behaviors there.  What I found surprised me.

You see, I had deluded myself into thinking that around the age of two Billy had started acting out and by age four, he was totally out of control.  Apparently I was living in a fool's paradise.  In my memory, he had been a sweet baby.  I already knew I had a faulty memory, but I really missed the mark on that one.  I also recalled that he had been "slightly" behind his sisters developmentally, but that it was negligible and chalked up to being a boy.  As he was the third child and a difficult one and my job at the time sucked the life out of me, I didn't keep a baby book or a record of his milestones.  I found that he wasn't crawling at nine months (I didn't figure out when he actually did start crawling) and that he was barely stringing together simple phrases that were unintelligible at two and a half.  Following are some excerpts from these emails:

January 2006:

he is such an unhappy little baby and we don't know why.  he is so hard to get along with and really wears us thin.  he cries so much and about the only way to keep him happy is to carry him around all day long, which makes it hard to get anything done.  even then, that doesn't always work--he still fusses.

he has come upon his milestones a lot slower than his sisters, remaining my "baby" longer than they did. 

a few months ago, i had tried to do the "cry it out" things with him because he always had to be "put" to sleep.  you had to rock him, bounce him, feed him to sleep before you put him down.  and usually it was in the bassinet in our room or in our bed.  but, it didn't work.  he would scream for hours!  so i gave up for a while.  about a month or so ago, we tried it again.  at first he cried for a long time, but he finally gave up and fell asleep.  the next night, he cried a little less and the next night, a little less.  there are still some nights when he might cry for 45 minutes to an hour, but more often than not, he will only cry for a few minutes or not at all.  however, this only works at night.  during the day, he'll scream forever.  a couple of weeks  i was so frustrated that i was sitting in the floor crying.  i had had my fill of Billy and it didn't matter if i held him or not, he was still throwing fits.  i had reached my breaking point with him, so the safest thing to do was to put him in his crib and walk away.  at first i did it just so i could walk away and get a breather, but then i became determined to break him.  the more he screamed though, the more it frustrated me and i couldn't even bring myself to go in there.  i was sure that he would eventually wear himself out and go to sleep.  and he goes to bed on his own at night--what's the difference?  no, he screamed for 2 or 3 hours.

about the only way i get ANYTHING done is i have "stations" around the house.  i'll put him in his crib or in the floor in his room to play and i will stay in sight of him and clean in that room, folding laundry or whatever.  when he gets tired of that and gets frustrated, then we move on.  he has his exersaucer and playpen in the living room, a portable high chair in my office area, his full-size high chair in the kitchen, and my bed and his swing in my bedroom.  in all of these places, there is a stash of Billy's toys, so i don't have to carry toys with me around the house.  but everything is on his schedule.  when he's done, it doesn't matter if i am done cleaning the kitchen or writing an email or folding laundry, it's time to move on.  and sometimes he is just done playing and i have to rock him to sleep.  sometimes i can get a few minutes free by putting him in the playpen with his bottle.  i am hoping that once he gets crawling and walking, he will become independent.  

November 2006:

Billy will be 19 months old on the 15th.  he is a handful.  he is into everything, screams pretty much all day, he's a tough guy that likes to beat up on anybody and everybody (the girls, me, the cat...), yet still a mama's boy that won't allow me to leave the room without him or he descends into another screaming fit.  he tries my patience.

Billy is being a monster.  he is screaming incessantly most of the day.  he drives me absolutely insane.  he follows me around the house all day and if i don't do exactly what he wants or sometimes i think he doesn't even know what he wants, he lets out these blood-curdling screams.

April 2007:

Billy is not getting along with the twins and is bullying the baby too [his cousins that were staying with us at the time], so it is CONSTANT fighting and screaming, hitting, biting, scratching, pushing down the stairs, etc.

September 2007:

he enjoys having mama all to himself all day [with both sisters at school], but he is a pain because he wants all my attention and he follows me everywhere.  well, that's not entirely accurate--he wants me to carry him everywhere.  he apparently can't walk from one room to the next.  if i don't pick him up and carry him, he has a major meltdown.  he is talking more.  there are words that anyone can understand, but then there are words and phrases that only mama can translate.

October 2008:

Billy was acting out horribly!  Billy was downright demonic!  he was out of control.  he screamed and kicked and said he hated me.  he threw a can of pop at mom's wall, dumped perfume on her bed, knocked her earrings all over the floor, ran out in the street, etc.  i couldn't handle him.  and i was losing my temper big time.  i was stressed enough and i already felt like a burden to mom then i have this wretched child destroying her house, making it worse.  i couldn't control him.

November 2008:

Billy started calling me names.  i'd try to tell Billy to do something and he would ignore me and do his own thing.  he was acting up and when i would correct him, he'd throw a fit.  he's like a preschool terrorist.

I can't believe that I forgot all this and had this picture in my mind of a content, happy baby.  Reading these broke my heart, thinking that my son has been unhappy his entire life.  Both I and the school counselor have recently asked him what makes him happy and I am devastated to hear him say that he doesn't know or "nothing."  What is wrong and how do we fix it?

Last night, I was invited to come to our church's prayer group so they could pray for me.  I shared about Billy and was touched to listen to them call out our names at the throne of God.  One thing that really struck me was when someone said something to the extent of "God doesn't make mistakes."  Billy is not a mistake.  God made him who he is for a reason and a purpose.  In all these years of dealing with this, I have rarely let myself think of Billy's future.  For one, it's all we can do to manage here and now.  For two, I'm scared to think of Billy continuing with the same problems into adolescence and adulthood.  What kind of life will he have?  What kind of trouble will he get into?  What kind of harm could he inflict on himself or others?  I can't allow myself to go there.  But, thinking about God having a purpose for Billy made me realize that Billy does have a future.  Jeremiah 29:11 "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."  I'm not going to worry about his future, but I know that God has a plan for it.

The prayer team also took time to listen to one of my "theme songs" as of late: Lord, I Need You.  One phrase stuck out at me--a different one than what I usually hear loud and clear: "And where You are, Lord, I am free."  Billy is anything but free right now, but I know who can set him free.

Stop the World, I Want to Get Off

(Originally written March 2013)

Oh wow, where do I begin?

This blog post will not be creative or clever or humorous.  This blog post is about me and my life lately, which has most definitely not been humor-filled.

So, after about four years of having my depression medicinally controlled, I recently had a relapse.  I've also been having panic attacks and I finally admitted I needed some therapy regarding my ex-husband trying to strangle me, so they diagnosed me with post-traumatic stress disorder.  I have put on a lot of weight (not sure how since I don't eat much and have IBS) and have been living with physical pain for the past few months that has been getting increasingly worse.  My doctor has been trying to get my GERD under control and finally sent me to a specialist.  They did an endoscopy and placed a monitoring chip in my esophagus that recorded 233 reflux events in 2 days.  That impressed the unimpressable specialist, so he sent me to see a surgeon to consult about having a Nissen Fundoplication surgery.  I'd never heard of that before, but it's a surgery in which they wrap part of your stomach around the lower part of your esophagus in order to clamp it closed and prevent acid from coming back up.  If they are able to keep it laproscopic, it is a few days in the hospital and a two week recovery.  But, if they have to do open surgery, the recovery is six weeks.  My reflux has been so bad that I have aspirated numerous times on the acid, which is both extremely painful and thoroughly frightening.  However, the surgeon I consulted with told me that I was too overweight for that surgery and recommended a gastric bypass. Not only do I not want any bariatric surgeries, but my insurance won't cover them.  So, I guess my only other option is to lose weight.  My husband and I have started using Weight Watchers three weeks ago and so far, I have lost 7 pounds, so I pray it continues to help us.  Along with going to see the GI doctor, I have been trying to make the rounds, doing what my doctor has recommended.  Tried to see a OB/GYN about possible tubal ligation syndrome and some painful cysts, but her bedside manner left something to be desired, so putting that on hold temporarily and will seek out a better doc later on.  I'm also going to a psychiatrist and therapy for the aforementioned issues.  They changed my medication and that made things really interesting.  I had an allergic reaction to the new antidepressants and broke out in a rash and my hands swelled and went numb.  Another med I was given caused dizziness.  I felt like I was walking around in a narcotic fog.  I felt unsafe driving or going to work.  Between my extreme joint pain, the dizziness, and the depression, I felt like I could barely move.  The new meds seem like they are helping, but it's slow and I have been weepy in the meanwhile, which I hate.  I get really frustrated with myself that my body betrays me.  Everybody has stress, so why do I bawl and get migraines and have panic attacks when I am stressed?  Lately, I have felt like I am barely able to take care of myself, let alone my family, or have the strength to do my job or perform my household duties.

Arrena, my oldest, is 12 and in the 6th grade.  I have long considered her trustworthy and responsible.  However, the growing pains of starting middle school have been harder than we thought.  Things are different than when I was her age.  We didn't have texting and internet or social media.  So, I needed some time to think and pray and determine what the rules would be for her.  In the meanwhile, the rules were: no boyfriends, no texting/talking to boys on the phone, no boys on the internet.  We got her a cell phone for Christmas, primarily for texting her friends.  The rules of the cell phone were no boys, no deleting conversations, and mom had free reign to look through the phone.  One day, a friend called me to report some suspicious content on Arrena's Facebook page.  One of her friends had posted something about her having a boyfriend.  I confronted her about it.  At first, she tried to lie to me about it, but finally admitted this was her second boyfriend.  Much crying and talking and apologizing, and I made her break up with her boyfriend in front of me and didn't let her go to the Valentine's dance at school.  I thought that would be punishment enough.  A few weeks later, her sister ratted her out that after breaking up with the boy in front of me, she renewed the relationship until she decided he was cheating on her.  Her friends were telling her that her mother would never know.  As punishment, I took her phone for a week.  The following day, I went through her phone and found that she had another boyfriend.  She was talking to her friends about texting a boy, but I couldn't find any text conversation with a boy because she had deleted it.  I found cut-and-pasted conversations in her notepad, talking about "love."  I had known she had a crush on this boy and had asked her a few days before if they were "dating" and she told me no.  It turned out that she had hidden him in her phone under a girl's name.  It's not so much about the "boyfriend" because at this age, it's little more than a title.  However, we know from culture that "things" are happening faster and faster these days.  I want to protect my daughter which is why I have rules.  It's not as much about having a boyfriend as it is about breaking the rules, and lying, and sneaking around, and being deceptive.  So, this time the punishment had to hurt.  I took her phone permanently and grounded her from phone, internet, social media, sleepovers, and extracurricular activities indefinitely.  I think quitting drama club hurt her the most.  She started off defensive and angry.  We talked about how I cannot MAKE her obey, but that she has to decide whether or not she wants to follow Christ and what Jesus wants her to do.  She asked me if she had to break up with him.  I told her that judging by the last time, I couldn't make her do anything, but that she should figure out if she wanted to live in disobedience and what being Christ-like meant.  After a few days, she came to me and told me that she had ended the relationship.  I am not sure how to trust her or how long it will take to repair the broken relationship.  She has been complaining to everyone who will listen about how unfair the indefinite grounding is.  I'm sorry, but since when did these PRIVILEGES become RIGHTS?  Some days I really think about switching to an Amish-like existence.  I think it would be better for all of us.  And apparently her dad is criticizing my punishment behind my back, all the while telling me that he agrees and doesn't like her friends and doesn't believe she should be on the internet at all.  Nothing like some cooperation in parenting and undermining my authority.

Kimberly is 10 and in the 5th grade.  She has been having attitude issues for a couple of years.  I have been concerned about her mental and emotional health for a while.  She doesn't sleep well and was having some crying spells.  She followed her sister's suit this past year in going through puberty and that ramped everything up about 30 notches.  She went from being mama's girl and a touchy-feely kid to being mean, hateful, and not wanting anyone to touch her.  I tell her I love her and she says, "whatever."  I ask her what she's up to and she says, "what do you care?"  I try to hug her and she flinches like I'm diseased.  She used to crawl up in my husband's lap and begged me to marry him and now she treats him like something she stepped in.  And it's not just us.  I've caught her screaming at her brother that he is a freak.  She mouths off to her teacher.  And she tells off fellow-students. And before I even finished writing this blog, I discovered by accident that she'd been looking at pornography on the Internet.  Then I found out that she was contemplating cutting.  She not only told a friend of mine and admitted it to me, but apparently one of her friends reported it to an outside agency that reported it back to the school, so the principal pulled me aside.  She is now on a mild antidepressant.  Then her sister squealed on her, as payback, that she had a boyfriend too.  Talking with her about these things initially improved things.  The other day, she was throwing attitude at my husband and I and when I spoke to her, she started questioning her faith.  She said that she's glad it works for me, but it doesn't work for her.  She said that if God is real, He doesn't care about her because He isn't helping her.  This breaks my heart more than anything.  I know how hard life is and I can't imagine doing it without having God to help me, without having hope.  I don't have many expectations for my children as they grow up or any high and lofty dreams.  The one thing that I want for them is to follow Christ.  I want them to grow in his love and to be Christ-like.  I don't want them to struggle through life and make life-changing mistakes.  And I want to see them in heaven someday.

I've written about Billy's issues before.  He's 8 and is in the 2nd grade.  We have been dealing with his behavior issues for years.  He has been going to a psychiatrist and counseling for 3 or 4 years.  We have been arranging and rearranging medication for him as things work and stop working.  They never wanted to pigeon-hole him, but the working diagnosis is ADHD, ODD, and severe mood dysregulation, although his symptoms could also fit Asperger's, which we have long suspected.  We have had our fair share of problems with him.  Primarily his misbehavior was at home.  He occasionally would act out at school or church, but mostly, he saved his meltdowns for us.  He has jumped out his window, tried to run into a highway, threatened me with scissors, called 911 for the heck of it, screamed obscenities/threats/hate, and threatened to hurt himself, among other things.  When he gets really worked up, we have to hold him down for about 15 minutes and he seems to reset.  He obviously has sensory issues and we know that certain situations will overstimulate him and cause problems.  As this has been going on for so long with little change and he has become more and more violent, the counselor has recommended that we look into in-patient treatment for him.  This is not something that I want to do.  He's my baby and I can't imagine turning him over to strangers.  He is a mama's boy and I am afraid of how he would take it as well.  I will do whatever it takes to help him, but I pray that it doesn't come to that.  This year, he has started really acting out at school.  Numerous times, I get phone calls while I am at work from the school to come and get him.  He has been suspended once so far, if you don't count all the times he has been sent home early.  They have made accommodations for him over and over.  I have tried to get him an IEP or get him into a special ed program, but they don't want to test him yet so close to the end of the school year, and with so little data since he has only recently been acting out at school.  In the meanwhile, I feel like we are stuck between a rock and a hard place.  He is running away from the staff, biting/kicking/hitting adults, throwing chairs, knocking over tables, totally out of control.  And it is usually over small things.  The other day he punched one of the support staff in her stomach.  I'm thankful it wasn't the vice-principal, who is pregnant.  They had to evacuate his classroom one day because he was on a rampage.  I don't know where we go from here because it sounds like the school is at the end of their rope.  I am afraid they are going to expel him and then I don't know what we will do.  When I talk to his dad about it, he blames us, the school, the medication, the doctors, etc.  He thinks we need to send Billy to him, that he needs more time with his dad (even though he goes months without seeing them of his own volition).  I sent the kids there for spring break and Billy's first day back, he was out of control at school again.  His dad thinks I should quit my job and homeschool Billy, even though he is not paying child support and when he does pay, it's an insulting amount.  I completed paperwork for evaluations from Children's Mercy and K.U. Med Center to try to pin down a diagnosis because right now, we are not trusting his psychiatrist.  When I try to research his diagnosis, I have trouble finding it and what I do find says the opposite of what he says.  We quit going to the counselor because he quit counseling Billy and switched to family counseling, which obviously isn't doing Billy any good and wasn't helping anyone else since Kimberly refused to talk to him.  I wonder how much longer we have before the violence at school becomes a criminal matter.  How long til they start calling the police when he hits the adults?  This has to be controlled before he is big enough to do damage to people.  How long will the school drag their feet before they acknowledge that he needs special education classes?  After two months of asking, I finally put my IEP request in writing.  I got a letter that they will contact me within 30 days, which is very close to the end of the school year.  I'm trying to fight for my son to have his needs met and be in a safe environment and not a drain on the staff, but then sometimes I feel like I am defending myself to them.  I feel sorry for him, that he is constantly in trouble, but what are we supposed to do???

When it rains, it pours.  Can't have one problem at a time.  And the world doesn't stop because you are struggling.  You have to go to work, you have to go to the store, you have to go to church, you have to keep going, while people all around you have no idea the turmoil that is going on inside of you.  You smile, you say "fine" when people ask how you are,  you put on the perky persona at work since depression doesn't sell.  Yet all the while, you feel like life is crumbling around you.  Why doesn't everyone else notice?  Why can't they feel the pain radiating off of you?  Why doesn't the world stop spinning?  And then you look around and wonder what is behind all the masks you see.  The cashier at the grocery store, the customer at work, the crazy driver that just cut you off--what private pain are they hiding?  And so you keep smiling, not because you feel like it or necessarily because you want to hide your pain, but because you want to give a tiny ray of hope to someone else who might be hurting.

Update on the Little Prince

My last post was one of desperation. I have to say that things didn't get much better after that. Billy's tirade lasted four or five days. One particularly bad day, I took my phone, walked out onto the porch, shutting the front door on the sound of Billy banging on his bedroom door, and sat down to call a close friend and cry. We talked for a while and one thing she said to me was that she was not an advocate of institutionalizing children, but she was afraid that in this case, it might be necessary. I was NOT pleased to hear that.

My husband had worked the night before and as he works 24 hour shifts, he was sleeping that morning. When he woke up and found me in a state of tears, snot, and raw nerves, he said I should have woken him up. He said that we might have to think about hospitalizing Billy. I immediately burst into sobs and wails, saying that's what my friend had said and I couldn't imagine such a thing. How could I send my 6-year-old away to strangers? He's my baby! My husband helped me count my blessings to calm me down and urged me to call our counselor to see what he thought.

When the counselor called me back and heard the tale of woe, his response was that if we didn't get him under control quickly, we might have to send him to a residential treatment facility. We met with him and I cried in his office. I knew that I would do whatever was best for Billy, even if it meant sending him to some in-patient treatment, but the idea of it ripped my heart out. Our counselor urged me to harass the psychiatrist's office every day until we were able to get an earlier appointment. He said he was not able to make diagnoses, but he was leaning towards Billy having bipolar disorder, as well as some OCD, which would require some other meds (which would hopefully bring the situation under control without having to send Billy anywhere). We, personally, have long thought he might have some mild autism, perhaps Asperger's.

The psychiatrist's office was able to get us in last Wednesday. Since our counselor works some days out of the same office as our psychiatrist, he had met with the doctor and discussed with him the problems and his observations before our appointment. When I came in, he asked me some questions and then asked me if we were willing to go to a stronger medicine. It carries more risks, but we are at our wit's end and we don't know what else to do. The counselor who has been at this for thirty years doesn't even know what else to do at this point. And it has to be better than sending him to a facility. So, they took him off his afternoon med and his antidepressant and put him on an anti-psychotic. The doctor is not willing to change his diagnosis yet or label Billy as anything, but the meds that he put him on treat autism, bipolar, and schizophrenia. My ex-husband's family has more than enough bipolar and schizophrenia to go around, so it is entirely possible that one or more of my children could inherit these problems.

So, we've started him on half a dose. When his body gets used to that and he overcomes his sleepiness from the meds, we will bump him up to a full dose. We are praying that this makes a difference for him and that he will have little to no side effects from it. He did not behave well Saturday, when I hosted a friend's baby shower. But, he has been pretty good yesterday and today, so we are praying that this continues.

One blessing to come out of this was that I visited a new Sunday School class last week and met a woman who has a son with mild autism. He was placed on the same meds and she swore by them. So, when the doctor suggested them, I had already heard of them. And it is nice to have someone to talk to who knows what we are going through.

Our next step with him is to get him a dental appointment. He has needed some work done for a while, but it was either that we didn't have the money for it or that we had hoped he would lose the baby teeth soon rather than wasting a fortune on teeth that may fall out in a month. However, he has a couple that are really causing him problems and look really bad. My husband also believes that if his teeth were fixed, he might eat more and might be better-tempered. However, I am not sure how we will get him to hold still for the work I foresee coming. If they come near him with a needle or a drill, he will flip. The insurance company said they would cover sedation if the dentist gets pre-authorization and can show reason why it is necessary. I had hoped for a little bit more of a concrete diagnosis for Billy. I mean, they might be more likely to approve sedation for a child who has autism or bipolar disorder than a child who is just diagnosed as ADHD. ADHD just doesn't adequately cover Billy.

If his eating doesn't improve after his dental work, I am going to take him back to our primary care physician. I worry about his physical health as well as his mental and emotional health. He hasn't gained weight in more than two years (he's always been very skinny), he's almost seven and hasn't had even a hint of a loose tooth yet, and he complains about stomachaches all the time. He doesn't sleep well either, but I assume that has more to do with the mental and emotional issues he has.

Please pray for my little guy. I feel so sorry for him. But, I also feel sorry for the girls and for us because we all suffer with this.

Happy New Year

So, if you know me or my family or have read this blog before, you know that my son has ADHD and ODD and we are in the middle of counseling for that, as well as medicating him. It has been a VERY bumpy road, but over the last four years, I've grown accustomed to most everything. I get tired and frustrated, but mostly, it's nothing new. This week has shown me that I ain't seen nothin' yet. Welcome to the new year....

Billy, as you may know, is six years old. He and his sisters went to visit their dad on Christmas day and stayed until the 27th. Billy came back a new boy. It was amazing. I thought maybe they had found a look-alike to switch him with or maybe he had been hypnotized or something. The only real answer was that his dad had given him a PSP (Play Station Portable) for Christmas and he was told that if he didn't behave with us, he would lose it at his dad's. As an added incentive, he was also informed that his dad would buy him some new games for it, if he was really good.

For two days, he was an angel. I was dumbstruck. He didn't get in trouble for anything. He was sweet and pleasant and I really enjoyed him. I was recovering from being sick, so it was nice to be able to sleep in, my husband gave him his morning medication, and then I woke up to a happy family.

We were running low on his morning meds, which are his primary ADHD medication. His psychiatrist had had to cancel his appointment and couldn't fit him in again until the end of January. They went ahead and wrote a prescription to make up for the month. His doctor's office is in Leawood, KS and we live in Raytown, MO, so I waited to pick it up until he had his counseling appointment in Overland Park, KS on Friday. While his behavior for two days had been exceptional, his counselor predicted it would be short-lived. Judging from the behavior we had recorded before Christmas, Billy obviously wasn't taking us seriously and it was time to up the ante. He brought Billy in and explained to him that he cannot continue to treat his mother the way he has and outlined the new rules, which allow very little wiggle room for him. And, sure enough, the good boy started to unravel later that day.

I didn't think to take the prescription in immediately to have it filled. He had his last dose yesterday morning. About 5pm, it dawned on me that it was New Year's Eve and the pharmacy might be closing early. I called and it was already closed. I thought I might go out after the kids went to bed and find a 24-hour Walgreen's to get it filled.

Billy ended up having a meltdown. It all started because he took a bite of a sandwich that had been sitting on top of the trash can. I said that was gross, so then he wanted me to kiss him, to gross me out further. When I refused, he picked up a can of Febreze and aimed it at me. I told him to put it down several times. He ignored me and sprayed me in the face with it. He not only got me, but also the chicken I was cutting up for dinner. I told him to go to his room and since this was his second strike, he would be getting a peanut butter sandwich for dinner, instead of eating with the rest of us. He refused to go, so he was escorted to his room. He returned with a boxed game and threw it at me, hitting me in the back. My husband got up then and dealt with him while I finished dinner. It sounded like a major battle in there, but Scott eventually got Billy calmed down, but not before Billy tore down the shade in the window.

However, after bedtime, Billy started banging on the door, which is a no-no, according to his counselor. As per the counselor's instructions, I went in and held him down for 15 minutes (once he gets riled, he continues to escalate--the holding seems to "reset" him), during which he fought me constantly, spitting on me, etc. After that, I found that he had broken a CD I had let him borrow from the library, so now he not only has to use his Christmas money to replace the shade, but also the CD.

I was so wiped, I didn't want to get out again, so we decided we would get his meds filled on our way to church since the 24 hour Walgreen's is about a block from the church. But, we slept in and missed church. When we woke up, we were laying there, discussing what the game plan was for the day when the house phone started ringing. The only people that ever call our house phone are the kids' friends and telemarketers, so we didn't run to answer it. But, then I heard sounds of a child skirmish, so I immediately went to check it out. Billy's hands were covered in what looked like glitter glue. His oldest sister was screeching about how he had dumped out all of her makeup and something about prank calls they had been getting. I was in the bathroom, trying to wash Billy's hands when the doorbell rang. Our middle child looked out the window and yelled, "Oh my goodness! It's the cops!" I could hear my husband let them in and talking to them and I gathered that Billy had somehow called 911. The "prank calls" the girls had been referring to was the 911 operator trying to call back. It came up as blocked and the girls wouldn't answer it.

I finished cleaning Billy up and sent him to put some clothes on since he was running around in his underoos, for some unknown reason. Then he went to face the two police officers in our living room. They were very nice and understanding, but the woman lectured him on the difference between an emergency and playing with the phone. He looked scared while they were there, but after they left, he was laughing like it was no big deal. We were NOT amused. We sent him to his room.

I went out to get his meds refilled. The pharmacy we usually go to was closed for the holiday, so I went to Walgreen's. They told me they don't accept our insurance anymore! Since when? I get his nighttime meds there every month because our other pharmacy doesn't carry it! And it isn't as though we have some weird insurance--it's Blue Cross Blue Shield! She said that they made a deal with CVS. Lovely. I DESPISE CVS! Now, I'm wondering if that's the only place I can fill at now. If so, that's ridiculous! And thanks for changing our insurance without telling us!

So, I headed over to CVS, reluctantly. Of course, instead of a 20 minute wait like everywhere else, it's going to be an hour (guess that's better than the time I had to go there for meds for an allergic reaction I was having--don't get me started). So, I go to the store to get a few things and kill time. While there, my phone rings. It was CVS calling to tell me that they couldn't run my discount card. Our psychiatrist gave me a 50% discount card because the meds are so expensive. Even with insurance, the copay is $60 a month. The card makes it $30 a month. It's still a lot when you add in that he has two other meds (not as expensive, thank goodness) and the copays for both a psychiatrist and a counselor (the latter he sees once a week). Well, I guess I didn't realize he had been on it so long, but it's only good for a year and guess what? The year is up. Of course it is. They told me that if I can get the info for another card over the phone, they can process it that way. But, it's Sunday and it's New Year's Day, so there is no one in the doctor's office to give me numbers off a new discount card. So, now it's a decision of whether I buy the groceries in the cart or buy Billy's prescription at full-price. My husband and I decided since it was getting so late anyways, we would just give him his afternoon pill and try to call the doctor in the morning.

So, I finished my grocery shopping and came home. We were putting away groceries and cleaning up when my husband found that Billy's bottle of nighttime meds (anti-depressant) was empty. I just filled it about a week and a half ago. I nearly lost it. Billy denied it at first, but eventually cheerfully confessed to pouring it down the drain because it tastes yucky. I'm looking into the face of this adorable 6-year-old, who is telling me that he just wasted some more medicine that I am sure the doctor will not refill this soon. He is smiling, like he he has had the best day ever, despite the police showing up, the absent meds, the glowering twitching parent in front of him. Then I notice the blue fish stamps all over his face. I look around the room and see green marker on the carpet. I demanded all the crayons, markers, stampers, anything that marked. I confiscated them all. Then I gave him an hour to get his room clean or I would clean it for him.

An hour later, my husband and I came back and filled up two trash bags. Billy acted like he didn't even care. How do you work with a child that doesn't care and doesn't have any remorse?

It's like I have an overgrown two-year-old. I feel like I need to sleep in front of his door or handcuff myself to him so that I know where he is and what he is up to every second of every day. He sneaks out of his room at night and pours liquid soap out into the bathtub or hydrogen peroxide all over the floor. He mixes soaps with bath fizzers. He scratches "No Girls Allowed" in the paint on his wall. He finds scissors and cuts large holes into his pajama bottoms and pillowcases. He squirts his sister's body lotion all over the basement floor. He put her lip gloss on all the doorknobs. And that's just the mischief he gets into.

There's the spitting and the punching. He calls me an MF. He calls his sisters the B-word. He calls everyone idiots. He throws things at his grandma. He tears up everything, or tries to, when he has a temper tantrum--from kicking car seats and windows when we're in the car, to tearing down blinds and throwing things when he's at home. He bites. He kicks the cats. He ignores me and tells me "No!" He runs and hides from me when he's in trouble or doesn't want to do something. He tells us he hates us and wishes we were all dead. He tells me he's going to kill me.

Calgon doesn't take me far enough away. If I were a drinker, I'd be an alcoholic for sure. His counselor says it's going to be slow progress, but times like this, I swear I can FEEL gray hairs and hear my life clock ticking backwards: there's another year off my life. I don't think MY antidepressants are strong enough for days like these. I hope that in a few years, I can look back on this post and laugh and thank God for how far Billy has come. But, I really hope it doesn't take years.

The Modern Family

Once upon a time, in a land not too far away, there lived a queen. She was neither a good queen nor a bad queen, but a queen that tried her very best. Her dominion was not very large: in fact, her subjects were very limited in number, but she loved them very much and would give anything for their well-being.

By and by, the queen had a son. The very idea of raising a son struck terror in the heart of the queen. She knew nothing about raising a modern-day knight. She had no magic mirrors or book of spells to help her, for this land was not magical. She feared her son becoming like the wicked king and she longed to instill the love of the Creator in him.

However, when the prince was born, he immediately bonded with the queen. The babe would stare lovingly into her face, bringing tears to the queen's eyes. The prince made the queen feel like a queen. The apprehension the queen had felt melted into love and adoration.

When the boy was a toddler, the wicked king decided that he was too much of a mama's boy and took him under wing, much to the chagrin of the queen. The sweet baby became a hard to manage child. He threw tantrums, he screamed, he hit, he kicked, he threw things, he said bad words. The queen remembered the sweet baby and loved her son still. She hoped he would grow out of this stage.

The prince started preschool. The queen received phone calls from the school that the boy was being mean to other students and could not be calmed and would not give ear to his instructors. As the problems escalated and the years passed, the queen realized that the boy was not outgrowing the issues. They were only getting worse. She went to parenting classes, read books, asked other parents, researched online. She knew it must somehow be her fault. She had done something wrong in raising the boy. The boy still loved his queen mother, however, and preferred her company above all others.

The wicked king, meanwhile, attempted to kill the queen and run away with the prince and the royal princesses, but his plans were thwarted. He was arrested, dethroned, overthrown, and left to set up a kingdom somewhere else. The queen found a new king, who was good and kind and loved the prince and the royal princesses and moved them into his castle, where he lived alone with his faithful canine companion.

As the prince began elementary school, the good king and the queen began to be more and more concerned about his behavior. Words like "high functioning autism" began to haunt them. So, they sought medical help. A doctor, or wizard of the first degree, sent them to a wizard of the second degree. He proclaimed that the prince had an affliction known as ADHD, complicated with a side of ODD. They tried different potions from the apothecary until they found one that seemed to calm the boy down. His behavior was still a problem, but he was finally able to sit still. They were then passed on to a wizard of the third degree.

This wizard gave them new parenting techniques and suggested new punishments for the prince. The wizard charged them with keeping a scroll of the boy's actions. The queen gained confidence in her ability to handle the boy and be a strong mother. However, she missed her son when he had to be banished to the tower, which was frequently. The wizard saw elements of OCD in the boy's behavior. One of his troubling observations was that the prince seemed happiest when he was playing by himself, being left alone.

Though the wizard was still working on the problem, the queen became nervous when the wizard mentioned "occupational therapy" if the prince could not gain control over himself and his actions. This, to the queen, sounded like giving up on her beloved son. She was further troubled when the wizard told them that the prince was selfish and narcissistic and that if they were to quit at this point, they would have to learn to accept him for who and what he is: someone that expects the world to revolve around him. The queen was brokenhearted when the wizard told her that her son obviously did not feel the same about her as she did about him or else he would miss her when he was banished to the tower. Since he didn't seem to mind being in the tower alone, he obviously didn't care about spending time with the queen or being a part of the royal family. The queen felt as though she had lost that sweet baby and that she'd imagined the close relationship she had believed she'd had with the prince.

As with all fairy tales, the question is whether they all lived happily ever after. Unfortunately, I can't tell you the answer to that question because the next chapter hasn't been written yet. We still don't know what is causing the problems with my son or how to help him.