Not losing sight of hope

As you might expect, we've had a number of ups and downs since the last post. The increase dropped the leukocyte count which then stabilized into the normal range. Our last check showed the Depakote levels as at the top of the therapeutic range, so we're staying at this dose and keeping an eye on things month to month. Last Thursday we had a bit of an off day, followed by a rotten Friday and a bad Saturday and Sunday. On Friday he threatened to bring a gun to school and shoot his teachers. Yes, it was a bad day. Fortunately he's only 4 so he isn't being expelled as he might be if this had happened when he was older. The school called to do a safety check and were very nice about it. They seemed satisfied that Pajama Monster has NO access to guns EVER. I'm hoping that this will all be part of the newly emerging pattern we're seeing. It seems that he has a good stretch of time and then a warning day, several rotten days and then another rocky day and we're fine again. It's hard surfing these and remembering that he didn't pick this, that he isn't just deciding to be a malicious little jerk. Still, it's not as bad.

Even during his good phases he has "stuck" moments usually several times per day. He just gets fixated on something and can't let it go. For instance, he decides that he needs to help stir the treat the kids are making BEFORE he washes his hands. He can't accept any reasons for this not being the case and will just keep screaming about it or fighting to do it till he's removed or till I'm able to talk him down.

Our psychiatrist is considering either decreasing the Adderall or adding some Prozac to deal with his stuck moments which she sees as anxiety based. I had actually been asking that we try decreasing the Adderall after the holidays anyway, but I'm hoping we're not looking at adding anything else in. When he gets stuck he seems so panicked over it. During his bad phases he gets even more focused on controlling his sister too. Being two, her coping strategy is to scream when he does this, so that's tons of fun for Mommy.

All in all I just need to remember that things are better now, and even though they're not perfect, and perhaps we'll always have periods where I need to carry him out from the play date, they are better. He's been able to go across the hall after bedtime to use the potty, a huge step in trust. Previously this always ended in him literally destroying things in the bathroom and making huge messes. We haven't had a real poo or urine incident since Oktoberfest, and I chalk those up to being overtired and overstimulated. I just wish that every day didn't feel like waiting for the other shoe to drop. It's also lonely because most parents of disabled children that I know have children who are autistic or cognitively delayed. I don't know anyone with a bipolar child. It would be nice to have someone going through the same thing to go through this with. Thank God I have a husband who is invested in me, the children and the family. I don't know what I'd do without that support.

Praise and Thanks to God!!

I've been praying for Pajama Monster. I'm a Mommy and a Christian, so of course I've been praying for him. I prayed for his conception and pregnancy and birth, and now I pray every day for him to just be able to have a good life. Lately that's been centering around his medications and health. I believe that God answers every prayer, but sometimes the answer is "no." Today, however, the answer about the leukocyte counts was "yes." Apparently, according to our psychiatrist, in some cases the body can adjust to the Depakote and stabilize the white blood cells. From his latest, completely normal WBC of 8.2, that appears to be what happened. His depakote level is 75, smack in the middle of the range, so we're increasing the dose slightly to see if we can get him nearer the best end of the therapeutic range. It's possible that a month from now my little Pajama Monster could be functioning like any other very gifted little snuggle bug. He might be able to function in preschool without behavioral specialists and go to playdates without needing to leave because of his behavior. Even if we never make it all the way there, this is manageable. Praise be to God for all his help! Without Him we would be truly lost!

Not the Mommy I'd like to be...

I'm not the energetic, always ready to play Mommy that I'd always hoped I'd be. The truth is, I'm drained. It seems like Pajama Monster needs so much constant supervision that when he is sitting and wanting to play with Mommy, all I really want to do is go in the bedroom and hide from the chaos for a little bit. I want to drink a whole cup of tea, or eat a whole bagel without having to stop Pajama Monster from bullying 5 or 6 times and redirect him back to his task another 15 times and then stop him from various other defiant acts another dozen or so times. Breakfast alone generally requires this number of interventions. I'm not a super picky Mommy when it comes to breakfast either. I'm pretty happy if the kids stay at the table, eat something, and no one is screming.

That being said, I know I need to play with the kids but often struggle because I am so drained. It's the emotional exhaustion that comes from needing to intervene at least once a minute for hours and hours at a time. It's from never knowing when a mood swing will happen. It's the weariness that comes from people raising an eyebrow at me when Pajama Monster acts out, and also coming over to lecture me when I do intervene early to prevent the acting out because somehow that's wrong too. If I give him meds I'm an irresponsible unloving monster who wants my child to be a zombie, and if I don't then I'm a worthless incompetent mother who is clearly causing his behavior. If he is having a good day then I'm exagerating and "overprotective," but if he's having a bad day then I get lectured on his bratty/violent behavior. Last week a mom freaked out at a playdate because her child urinated behind a tree and my son was trying to play in it with a stick. I didn't ask why she thought it was reasonable for her son to be urinating with an audience in the first place. That's what I get for turning my back for a second to hear what Peep was asking me.

I feel silly and whiny saying that I don't have the energy to play legos and cars, but sometimes it just feels like I can't handle the strain of wondering when the next problem is going to start, or who is going to try to shove their unwanted judgements down my throat while I'm elbow deep in another Pajama Monster meltdown. When I'm not feeling worn down I can just ignore most of these, but some days it gets to me. I do find myself reading a book at the counter some days, or taking my laptop out to the kitchen and reading or surfing when I could be playing, then I feel guilty because I know Pajama Monster wants to play. I love him so much, but sometimes I wish he had a 10 minute pause button, just so I could catch my breath and collect my thoughts. I've tried many times to add in a little structured Mommy/kid exercise time or yoga time, but Pajama Monster just can't handle it. If I'm not playing his game his way with him in control of my every move then it doesn't count for him as being played with. I know that this just shows that he needs play time even more because he needs to build his play skills, but some days it's hard. I suppose that's just part of being a Mommy. It's just magnified with the bipolar.

I whined to my husband about feeling worthless because I'm so tired while other moms are out there baking fresh bread every day and chairing the PTA. My husband reminded me that on top of the parenting those moms don't have all the therapy appointments, psychiatry appointments, special ed. meetings, social skills meetups, support group meetings and also probably don't have to shampoo urine out of the carpet 4-5 times a week. That made me feel a little better. Maybe other moms aren't really doing more, but just doing different. Society spends so much time telling us that Bipolar isn't real and meds are unnecessary that some days I guess a part of my brain (albeit a dumb part) buys into it and wonders why my life feels so hard.

And the Saga Continues...

The last few months have been a long series of blood draws and "wait and see" pauses. Behavior in these last months has been better than ever before, but that doesn't mean we're anywhere near normal. Still, it's manageable. He often goes many days at a time without destroying anything or hurting anyone. Tantrums calm faster and we're able to do some activities as a family. We went to the renaissance faire and my little boy asked to go dance with everyone in the big circle. It was wonderful! He was so proud of himself! We went camping twice and things went really well.

We've never gotten the Depakote levels up beyond the low middle of the therapeutic range, and the Leukocyte count has stayed below the normal range, but just barely. We've discussed trying a different med, but the problem is that there are really only about 3 places to go from here. One it Lithium, which has a very thin window of efficacy and becomes toxic above that level. Below that level it does no good. At Pajama Monster's size that window is so tiny that moving into the toxic range is very probable, so that's a no-go. The second option has some potentially permanent side effects that increase in probability with exposure, so starting at age 4 means I'm likely signing him up for permanent side effects, even once the med is stopped...also not something I'm willing to do. The final option is to stay in the Depakote family. The Lamictal that sent him into a manic fork wielding attack on the baby is also in the Depakote family, so we might be back in for another episode like that, or we might have the same problem with low Leukocyte counts. That's our best and only option as I see it if the Depakote can't be made to work safely.

That brings us to our current situation. Pajama Monster's last blood tests showed his leukocyte count as barely back into the normal range, but his Depakote levels have dropped below the therapeutic range, despite the fact that we INCREASED the dose a month ago. The psychiatrist believes that Pajama Monster's liver has just gotten fantastic at munching up the Depakote and that's why the levels are dropping. This happens with some meds, especially some in the Depakote family. It sometimes takes several increases over the course of several months to get to a stable level.

My husband and I had been wondering why, despite the increase in dose, Pajama Monster's behavior had suddenly started getting worse. He's been encouraging Peep, who is now potty training, to poo in a bucket in the yard and then hoarding the bowel movements in his play house outside. He's also been playing in his urine and being more generally defiant and violent. I've also noticed that he's been wanting to pretend that he has bags of garbage, piles of garbage, a dump, etc again. This is an old game of his that had disappeared and seems to have come back. He essentially just stuffs toys, papers, etc into bags and carries them around and hides or dumps them places. I don't mind the game, but it is interesting that it shows up when he's having other problems and subsides as his behavior improves.

The final thing I've noticed is that he seems to be wanting to pray for forgiveness for things, was obsessed with idea of writing worries on paper at a wedding ceremony to give up fears, is anxious about things in general, needs to finish tasks, even if finishing is just picking up the thing I set down and setting it down himself, etc. For most parents these would probably be lost in the noise of Pajama Monster's other oddities, but I should probably mention at this point that I have confessional OCD, as do both of my siblings, and my mother. Her mother also had OCD, but I don't know the variety. Onset is usually around the start of puberty, but perhaps it's early for Pajama Monster. I don't want to throw another med into the mix. No one in my family has ever used meds for the OCD. It's just a living hell for a while and then with a lot of focus and practice it subsides into manageable hints of symptoms that we carry the rest of our lives. I think it's time to start pushing the Psychologist to begin addressing or at least considering more strongly the possibility of OCD.

For the moment we're increasing the Depakote again and blood testing again in a month. Wish us luck. Prayers for my Pajama Monster are always welcome.

Leukocytes and Depakote

We just got the last of Pajama Monster's blood test results back. The Depakote levels are in the low end of the therapeutic range, so based on behavior (he's for instance tearing the plastic covers off the toilet bolts and flushing them, slapping Daddy, etc.) we can increase now. All other readings look great EXCEPT the leukocyte count. It's very slightly below the normal range. The leukocyte count is a measure of white blood cell/immune system health. Essentially, there is a chance we're improving everything in our lives and Pajama Monster's life at the expense of his little immune system. The levels aren't dangerously low...yet. We're doing another blood test in 2 weeks to see if they're still low or if it was just a fluke caused by something else.

This is the best things have ever been and in 2 weeks we may be right back where we started from, trapped in a stinking house full of poo and urine soaked carpet with a son laughing hysterically as he carves up the drywall and attacks his sister. I don't want to stop the Depakote. I really, REALLY, don't want to. I want to increase it to the top of it's therapeutic/safe range and see if things can just be normal then. I don't want to move on to heavier duty/scarier meds and I don't want a complicated huge med cocktail, but above all I don't want to endanger my child. Sadly, that leaves me with only one choice if the Depakote is trashing his immune system. I suppose all I can do is try to enjoy things for the next 2 weeks and pray that the low leukocyte count is a red herring. Why can't anything ever be simple? At least we've had a few weeks. We went to the zoo and went out to eat and got coffee and it was wonderful! Sometimes we ended up boxing our food up and carrying a screaming, hitting Pajama Monster out of the restaurant because he was mad that his noodles won't stay on the fork, but that didn't happen every time. It used to be about a 90% chance that the evening would end that way, but now it's more like 20%, with about an additional 40% chance that we'll have a couple incidents that require removing Pajama Monster to let him calm down. That used to be a 100% chance. It's not perfect, but it's so much better and the fear of losing all this is killing me. If anyone out there is reading this, prayers for my little Pajama Monster and his immune system would be very much appreciated!

That Was Fast!

Pajama Monster had his blood draw yesterday and subsequent McDonald's trip. He again handled it better than I could have hoped. Even McDonald's went well till he randomly dipped a toy in ketchup from the trash can and wiped it on my face. Apart from flushing part of our toilet paper holder down the toilet, the evening wasn't as bad as usual either. The Depakote blood levels came back at 66 with a normal range of 50-100. I've e-mailed the psychiatrist with an update on Pajama Monster's behavior but she won't be available till Wednesday. I'm not sure if she'll want to increase the dose further or not. I think I'd be much more in favor of that than in adding any new med into the mix.

We seem to be ahead of schedule though. We should be heading into weeks of hell about now. Despite that, with no change or increase in the medication, Pajama Monster had a great day today. He got in trouble for a few minor things and calmed down rapidly. That seems to be the biggest difference we see on the Depakote. Even when it isn't stopping many of the negative behaviors as it hasn't been for the past week, it seems to allow him to recover and return to normal behavior MUCH more quickly. I'll find him in time out playing calmly on his floor after just a couple of minutes, which is what I would consider a normal time out. Before the medication it was normal for time out to basically just function as containment till he appeared safe to be out of his room without hurting anyone or destroying anything. That would sometimes be hours of screaming, poo smearing, throwing toys, kicking the walls, etc. Now he's sitting on the floor playing with blocks when I go in to check on him.

The other thing we're noticing is that while there still is obviously a cycle happening, it's not the same as before the Depakote. Normally there were many many swings in any given day. We'd have a number of very bad spells lasting weeks, and then onece or twice a year we'd have a good spell lasting a few days to a week. Now we've had several pretty good weeks with one week of moderately bad behavior and now seem to be improving again. It's impossible to say how this will play out again, but I was really expecting each day to be worse and worse followed by many weeks of truly horrible behavior.

Reading over my own blog, I sound bipolar. One post I'm full of hope, the next I'm beside myself, then optimistic again. That's what life is like with Pajama Monster. Each day brings something new and we simply have to take things as they come, reveling in the good times and gritting our teeth through the bad.

Here we go again...

Well, yesterday was rotten. It started Friday when we had a playdate with a little boy from school. Pajama Monster had a great time but got way too wound up and started acting out by ripping things, pouring juice into their carpet and repeatedly sticking the cat's loose catnip in their shoes. We ended the playdate and I tried to get Pajama Monster back on track, but he continued to be off for the rest of the day. When he's in that state he just does lots of little things he know he shouldn't do. It's the push buttons, stick your feet on the table, throw the toy in the trash kind of behavior. He does each behavior very deliberately and is delighted when we see it. Saturday was a constant series of such small acts of defiance. We managed to go out to eat but Pajama Monster had to be taken out of the restaurant at one point because he wouldn't just sit and eat but insisted on deliberately doing the opposite of everything he was asked to do, loudly.

On Sunday Pajama Monster started again acting out in little ways, then threw a bunch of the sugar packets in the trash at the coffee shop, refused to take his time out and was generally rude and loud and defiant. He's been hitting off and on for the last several days as well. That was the end of our family fun for the day. When he acts like that we have to give up all family plans to go out to eat or visit a park, etc. and just go home. If we don't it gets progressively worse and always ends in him screaming and hitting and unbuckling himself and running frantically doing as many bad things as fast as he can. We took him home from the coffee shop and tried to get him calmed down but the rest of the day was just a series of little incidents of him picking at people, being defiant, and trying to make everyone upset. They weren't horrible individually. They were just constant little things like pulling all the towels down so I'll have to pick them all up and put them away again or yelling and being loud whenever we tried to sing Peep her lullabies at bedtime. It wasn't full strength Pajama Monster, but it feels like we're headed there.

This morning I woke up and had to walk him through potty and toothbrush time. He claimed he didn't have to urinate. I asked him to play for a little while and eat his banana as I nursed Peep. When I came back I found that rather than playing he had elected to squat in his doorway and urinate into the hall carpet. He has a potty in his room and is across the hall from the bathroom. There was no reason and he wasn't remotely sorry. He just wanted to be rotten, yet again.

I feel like this is just our reality. We all get dressed and ready to go do something as a family and then Pajama Monster starts acting out and we all just get to sit around the house wishing we could do the same things everyone else gets to do. I have this fantasy of walking along at a beach or science museum or zoo or campground with my husband at my side and our two babies running around exploring. It's just a fantasy though because the reality is that my husband wouldn't be there. He's unwilling to be out somewhere that far from home with Pajama Monster because then we're stuck there dealing with him when he acts out and he's much harder to contain. The reality is that we usually don't get to go at all, and when we do it's just me with the two kids trying to contain Pajama Monster so he won't just suddenly start running around trying to break, damage and destroy.

For almost three weeks it felt like we had an answer. Pajama Monster was playing and laughing and reading his first Dr. Seuss book all by himself. He was snuggling and arguing with his sister and playing with her and apologizing when he did something wrong and getting excited about playdates, but then it just seemed to start swinging back the other direction. I'm afraid the psychiatrist will suggest adding yet another med into the mix. I don't even want the ones we're already using. I'm not sure how much worse things will get on the Depakote. So far things are looking better than they used to, even if they're not what I was hoping for. How much does it have to help to be worth giving to a four year old? My thought is that it would need to help a lot to be worth the risk.

I feel like I spend part of my days angry and most of the time heart sick. I just want him to go through the day without gleefully going out of his way to make everyone's life miserable. I can handle fighting with his sister and the occasional pushing or hitting, and tantrums when he doesn't get his way. I can handle the testing limits and the questioning things and even the whining, but this is different. He gets a look on his face and you realize that he can't be trusted for a second because if he has a pencil he'll use it to stab holes in the couch and write on the walls. If he gets a bath he'll bale the water out all over the floor. He'll take the dirty diapers and hide them under the couch and smear his own poo everywhere. He'll throw garbage in your tea when you're not looking and then knock his sister into the wall because he doesn't like being told he can't have another pencil. They're not huge things but they're constant. I'm trying so hard to help. We've spent years trying to help him name the feelings he gets when he's acting out and trying to get him to tell us when he's feeling that way. We've worked on countless calm down strategies and methods for us to soothe or help him self soothe. I play with him and comfort him and cuddle him and read to him and do art projects and activities and outings with him, but nothing changes. In the middle of every moment is the knowledge that he still will routinely ask for a kiss and then spit on my face or pull my hair when I lean down. Knowing that I have a bad back and it hurts me if he jumps when I hug him, he'll consistently as for a hug and then just jump and pick up his feet, whenching my back but secure in the knowledge that I'll throw my back out rather than let him fall. But what's my choice? Should I refuse to ever hug or kiss him? I'm just not willing to do that, so I get spit on and hurt and spend my days scrubbing poo, because I'm Mommy and that's what he seems to think I deserve. Some days I think he hates me, but then I have to sit and remember his illness. No one would choose this. It's not his fault. He doesn't hate me. It just feels that way.

Attachment and Reconnecting

I know I'm getting ahead of myself since we don't know that the Depakote will continue to work. If he continues to do better and then worse we can't keep upping the dose or it will become unsafe. That's just not an option. Still, he's my baby and I'm going to hope this time because I feel like I have to. I love him and I want this for him so badly there aren't even words.

As Pajama Monster has more days that bring no more than normal Preschooler problems I'm beginning to look more at our attachment. I feel that being forced into the position of warden for so long, just to keep the family safe, has done damage to our bond. Pajama Monster is still a snuggle seeking, Mommy loving, little boy, but I've noticed him seeking out more mommy cuddle time lately and being more upset if I'm not available all the time. I think he's wanting to strengthen his sense of trust and attachment and I want to help him with that. I'm beginning to be able to go back to more AP methods of discipline. We still have time outs, but they're more rare, as Pajama Monster has become more responsive to invitations to problem solve together and reminders of how his actions make people feel. He's more easily redirected with silly games and new activities.

I find that I'm struggling with my own fears any time a behavior looks like one of his old problem behaviors. For example, when he was getting ready for a full scale destructive, hitting, etc. fit, one of the first things he'd often do is flip open the gas tank door on our car. Usually it was the gas cap several times then running and hitting while I buckled him in, then unbuckling himself over and over while screaming at the top of his lungs and kicking my seat and knocking the head rest up so I couldn't see behind me. He'd also harass and attempt to hurt his sister if he could reach her, and generally be as rotten as possible till I could carry him, pinching and screaming and hitting, into his room where he's poo or urinate on everything. The action of flipping open the gas tank door itself does no harm, but we didn't want him opening the gas cap, so he has been asked to leave it alone. It's just an association, but when he did this yesterday I could feel my adrenaline rising. I was able to ask him if he was hoping for a good ride home playing games with Mommy or a bad ride home, and what things he'd like to do. He made up a silly game of Mommy saying "Microwave, Microwave, What are you toasting?" and he'd answer with various silly options. We had a good ride home playing the microwave game and a nice evening, but my initial gut response was to overreact because jumping to maximum containment was what had always been required in the past after this small act. I can't overlook my gut responses because they'll help to tell me if we are having a bipolar episode, but I don't want to overreact just because things have always been bad in the past. I'm sure that as thing/if things continue smoothly over time I'll begin to lose the knee jerk panic reaction, but for now it's something I really have to work on.

We've always used attachment (or what I consider respectful parenting) approaches as much as is safely possible, but here are some attachment techniques that I'm beginning to resurrect:

* Reminding of the impact of his actions and checking to see if that's what he wants
* Offering a silly distraction or humor to diffuse a situation
* Sitting with Mommy to calm down when he's getting wound up
* More snuggle reading time, mostly because he doesn't spit on or pinch me lately
* Offering help problem solving
* Calling a re-do because we're not working as a team

Wish me luck and I'd love to hear anyone's experiences as you navigate through the roller coaster of life with a disabled child.

A Bump in the Road

Last weekend was not good. It wasn't full strength Pajama Monster rotten, but my husband and I saw it as an indication that these last few weeks were possibly just the good end of a swing and we were headed straight back into hell again. Saturday felt very ADHD. He wasn't malicious but just very impulsive and whiney. Sunday brought us back to bipolar land with it's destruction and urinating on the heat vent, etc. We've been mostly poo and urine behavior free for the last several weeks. We had about 2-3 days of rotten and increased the dose to 4 pills of Depakote (actually available in a one pill time release formulation now)on Sunday. This wasn't related to the swing, but rather just the schedule we'd already agreed on with the psychiatrist. Things have been mostly positive since. The kids have been playing together with only minor sibling issues. For example Pajama Monster pushed Peep off a step this morning because she wouldn't move when he asked her to. He did admit it though and took his time out and went back to normal life. For the first time time outs are starting to feel like they were intended to be: a short break for Pajama Monster to pause, calm, and change his behavior before coming back to play. For over a year now they've felt like nothing more than a way of containing him when he's attempting to hurt us and destroy things.

We'll do a blood draw (and McDonald's trip) early next week to make sure things are still in a safe range. We're seeing no signs of side effects, but this isn't something to chance. If things continue to work Pajama Monster will stay on the same dose and do blood draws about twice a year to make sure everything stays at safe levels. It makes me cringe to have him on Depakote, or any med for that matter, but he feels like a happy, creative, bright, funny little love again. I still see no signs of flattening or drowsiness or fatigue or spaciness on the Depakote, so I'm just going to pray that maybe this really is the answer we've been looking for.

That's not what "Sensory Friendly" means

In the area I live in we have a local play area that consists of a few giant rooms full of bouncy houses, bouncy slides, etc. Normally there is also loud music and crazy lights going on. In an effort to be autism friendly they have stared opening their doors once a month for a "sensory friendly" bounce time. The problem is that this means everything is as usual minus the crazy lights and a bit of the volume. What that leaves is 3 giant rooms full of incredibly brightly colored bounce houses, still loud music, fans to inflate the houses, fluorescent lights, screaming and running children and general chaos. I appreciate their attempts to make the environment more friendly for children with sensory issues, but they obviously don't understand what sensory processing disorder means. If I only had to worry about rooms with bright flashing lights and blasting music I just wouldn't take my son to any rock concerts and we'd all be fine.

Sensory processing disorders can take many forms. In Pajama Monster's case it means that he has poor motor planning and doesn't seem to be able to filter outside stimulation very well. He essentially doesn't know where his body is, and so steps on other children, trips, falls out of his chair, Godzillas his way through other people's games and is generally clumsy. He also has a lot of trouble on play equipment and is therefore unable to join in with other children on playgrounds. That's all the motor planning piece. The filter problems essentially leave him feeling overwhelmed and frantic when he's exposed to noise and visual stimulation. I think this is why the supermarket is so difficult. It's full of bright lights, loud sounds and lots and lots of bright packaging. Our current method of grocery shopping involves an MP3 player with headphones, sunglasses and a thick green smoothie with a skinny straw. I'll sometimes substitute almonds for the smoothie. The sucking and chewing stimulation is soothing.

Imagine you're in a room full of people all trying to get your attention while you try to read something important from a book that keeps flashing random pictures at you as someone taps you on the shoulder incessantly. Imagine the stress you'd feel trying to sort through the chaos to the information you really need. For some children this is just their average day. Everything they encounter is one more "look at me!!" If you sit and listen for a moment you'll probably hear the noise of your heater, perhaps cars outside, maybe the computer fans. If you focus you can probably feel the seams on your clothing and your hair brushing your neck. Imagine if every one of these sensations was vying for your attention. I think that's part of my little Pajama Monster's life. Fortunately Pajama Monster's case isn't as severe as some children I've met, but it certainly influences his coping skills. For now it means that no matter how much fun sensory bounce may be, I usually need to stay away because we will have a meltdown of epic proportions and meltdowns are damaging to a child's self esteem long after the meltdown has ended.

One large frustration right now is that all the providers seem to be playing hot potato with the sensory problem. I've been told by the pediatric Psychologist, the school OT, the insurance OT and the initial IEP OT that they believe there are sensory issues involved in Pajama Monster's problem. Unfortunately unless he can't use a pencil the school won't touch it. The psychologist simply isn't qualified to treat it, and the insurance OT doesn't treat sensory processing disorders.

With so many things going on at once how do I tease out sensory issues from ADHD from Bipolar disorder? Well, I may not always be right but it's partly gut instinct and partly that sensory leaves Pajama Monster with a "deer in the headlights" look of panic on his face. ADHD leaves him with an "Oh no! I forgot!" surprised look, and bipolar leaves him looking both delighted and crazed. I'm not sure where the heartbroken and panicked look over trivial things comes in, but I suspect anxiety, perhaps because he's feeling off kilter becasue of sensory or ADHD issues. I suppose it's fortunate that for most of these the most helpful thing I can do is hug him.

Impact on Mommy

I should probably start by saying that I realize my husband is equally impacted. For a long time he talked about wishing he could stay at work because dealing with Pajama Monster can be so horrible, and quite honestly after a day of Pajama Monster I'm not always the happy and encouraging wife I'd like to be.

I went into motherhood expecting some stretch marks, etc, but I thought that the majority of the impact would be from the pregnancy and possibly the delivery. I've found that for every year Pajama Monster ages I seem to age 5. When I gave birth at 29 I could have passed for 23 pretty easily. Now I look older than I am. My hair is thinner. I'm exhausted all the time. My face looks thinner and older. To cap it off, I've been having dizzy spells so often that I've ceased to even note them. I'm pretty sure the dizzy spells are coming from neck tension and stress, but that doesn't make them any more fun. I realize that at 34 I was bound to start showing my age, and self care certainly tends to fall by the wayside when you have little ones, but this feels far in excess of what I'd expected. I think it's just that with stress, worry, and depression, my constant enterage, I'm bound to be in worse health. I'm not depressed by nature. It's just hard to see the bright side when you're scrubbing poo out of a stinking carpet for the 6th time that week while your husband holds your son in a restraint to keep him from smearing the poo on you and Daddy.

Depakote for my Preschooler: Still Promising

OK, I think I may be ready to get my hopes up a little. It's been several weeks now. We're up to 3.5 pills and things are better. They're not perfect. Pajama Monster has normal preschooler naughtiness, which is fine. He also has weepy moments where he gets "stuck" on something and really needs time to calm down. We use the explosive child model for those. The third and final behavior problem seems to be the old Pajama Monster problem, and that's where we're seeing the most improvement. We're seeing less of the random defiance, less manic laughing, less seemingly random or just bizarre destruction. The poo smearing and urine behavior are still there, but marginally better. Evenings after about 5PM are the hardest, though I wonder if that's related to the Adderall wearing off completely. We may switch from Adderall to Strattera after we see what's going on with the Depakote for another month or two. The best part...people are starting to comment that Pajama Monster seems to be doing better. Oh please, please, please be the right answer for my little baby!

Depakote: Better but not great

I'm not sure how this roller coaster will end, but the Depakote does still seem to be helping. Last night Pajama Monster poured urine into a mechanical toy firetruck and later in the evening he smeared poo into his carpet and window. I made him clean it last night so we could start fresh in the morning. Today we had a good morning and went to play at a coffee shop/play area. Fun was had by all. We came home and Peep took a nap while Pajama Monster ate lunch and played outside. All was well till I attempted to go grocery shopping. Peep started screaming and I discovered that Pajama Monster had bitten her because she was sitting too close. I removed Pajama Monster and attempted to grab the last few list items. Pajama Monster proceeded to waffle between defiantly throwing things on the floor, and contentedly walking with the cart. On the way out he threw a stack of gift cards in a nearby trash can. We went home without further incident and Pajama Monster spent the next 15 minutes in his room in time out with the door open. He was sent back to time out about 8 more times over dinner for things like throwing his fork and various defiance. The sad thing, this is still better. During a normal Pajama Monster incident there would have been much more violence both toward myself and Peep, and he would have smeared poo or vandalized something in time out. He also would have been horrible on the ride home and would have escalated steadily the entire time at the store and would currently be going out of his way to make my life unpleasant instead of playing with his sister as he is currently doing. All in all it was terrible grocery store behavior, but really, not unmanageable, certainly not compared to what I'm used to. It's not the miracle pill so far that I had hoped for, but it's still better, assuming this isn't just a mood swing that just happens to coincide with the Depakote instead of being caused by it. I just hope things don't get worse from here. There's still every possibility that the psychiatrist will increase the dose in another week, which may improve things as well. I hate to get my hopes up, but this time I think I may still be seeing a glimmer of hope. We'll see what bedtime brings.

Medication vs. Overmedication: How to tell the difference

I was doing some random web surfing and came across the case of Rebecca Riley. You can google it or find an article here http://en.wikipedia.org/wiki/Rebecca_Riley The photo in this post is of little Rebecca, not Pajama Monster or Peep.

The upshot is that a little girl who was only 4, Pajama Monster's age, died after her mom and dad and psychiatrist drugged her to death. I'd like to say that I don't understand how this happens. After the fact many people spoke of the child walking into walls and needing to be carried because she was in a stupor. The sad fact is, I've seen this. I knew a child who was drugged to the point of inducing seizures and was functionally a zombie. Fortunately she had a very good psychiatrist who stopped the medication as soon as I reported this. The sad thing was that I only saw her after 9 months on those meds, and neither school, nor parent had said a word. The parents opposed stopping, but the psychiatrist didn't give them a vote, because he wasn't ok with drugging children into submission.

The point of my story? Not all pediatric psychiatrists are pill crazed maniacs. Actually, most aren't. An appropriately medicated child should seem normal. You should have no idea that they are taking anything. They shouldn't seem sedated or lethargic or have memory lapses. They shouldn't be extremely quiet and easy to manage. If you can tell they're on medication, especially at 4, then something is wrong. Talk to your doctor and tell them that zombie-preschooler isn't ok. Try a different dose or a different medication. How do you tell if they're overmedicated: when you see the meds and not the kid, or when anyone has any idea after meeting your child that he/she is on medication. That's how you can tell. Your child should have personality, and lots of it. If they don't, something is wrong. You should also never medicate anything that can be handled by other means. If your child isn't sleeping, move the bedtime, try a new bedtime routine, star charts, etc. If your child sasses you, use behavioral techniques or I'm sorry but you may need to grow a thicker skin. Meds are for problems that are hurting your child and making them non-functional. They're for the 2 hour fit and smashing walls and stabbed my sister with a fork kids. They're not a shortcut to compliant kids without the hard work of parenting. Most of us have climbed this mountain with caution and forethought and love, but sadly a few just want meds to shut their kids up and they're the ones that everyone sees when they think of childhood medication. They're also often the ones whose kids are reacting to poor attachment and poor parenting and don't really need the meds in the first place.

A child that is sleepwalking through their childhood is missing more developmental stages than I can count. As they fall farther and farther behind they will appear more and more immature relative to their peers. Also, don't mistake sedation for "good behavior." Many parents respond to this lack of development by requesting more meds. If your 8 year old has been a med-zombie for 3 years and acts like a 5 year old, tantruming and not sharing and poor manners...it's because he is 5. He's missed 3 years of his life and is stuck at the last developmental stage in which he was fully conscious. The problem is that even un-zombied he will have trouble catching up because severe immaturity is not well tolerated by other kids. Teasing and shunning will make him even more socially awkward. The safest bet is to never put him in that situation at all.

Rebecca Riley's case was tragic. It was horrible and there is simply no excuse for something like that happening, but it isn't a portrait of pediatric psychiatry. It is a portrait of medical abuse facilitated by a monster or an incompetent, possibly both. Sadly, people point to this as the reason children shouldn't be given meds. It isn't a reason to avoid medication. It's a reason to avoid incompetent psychiatrists (If they let you pick the meds and dosage, possibly even giving your child other people's meds...go elsewhere and also report them!). It's also a reason to watch your child carefully for sedation and other side effects. It's a reason for trying everything psychotherapy has to offer before even considering medication and for having a very thorough, not just one visit, evaluation done before considering medication. It's a reason for being open about your parenting, even the parts you're not proud of, and for allowing your child's team to talk to school and daycare, etc before prescribing medication. Medication isn't always the answer. It frequently isn't the answer. Think long and hard and try everything less drastic before considering medication, but don't rule it out because one parent did something truly horrible, That's like avoiding bathtubs because Andrea Yates drowned her children in one. Like Andrea's children, it was the sickness of her parents that killed Rebecca Riley.

In summary:
1. Don't mistake sedation for "good behavior"
2. Never try meds before you've tried every less invasive method. Yes, I know it takes a long time.
3. Never be afraid to seek a second opinion if the meds seem too much
4. A sedated kid is not a properly medicated kid
5. Meds are not a parenting shortcut and should never be used as one.
6. Some kids truly need meds. I know what that feels like. Have some sympathy for parents trying to find help for their child. Giving your child medication can be a decision made of love. Don't judge based on a glimpse. A bipolar child is bi-polar, meaning 2 polar opposites or 2 opposite ends of a spectrum. They bounce between extremes so of course they have wonderful moments. For many of us the decision to try medication is painful and frightening. Judgement only makes an already difficult decision that much more painful. Try to see things through our eyes before you tell us what we should be doing. We'll try to do the same for you.

Depakote update

It's been almost a week on the 3 pills Depakote dosage. We've had some ups and downs, but the downs seem less extreme and more brief. Last night Pajama Monster smeared poo again, but it was about 3 tiny fingerprint spots on his floor, one small streak on the wall, and a handfull of little fingerprint spots on the window. Normally these incidents are epic and require at least an hour of carpet shampooing and wall scrubbing and window cleaning etc. I'm not thrilled that it's happening at all, but this is MUCH better. I'd also found 2 tiny poo marks on one of his outlets earlier in the week, but other than that he hasn't had any poo incidents in almost a week. We had an incident on the bus with Pajama Monster refusing to sit in his seat, but he wasn't violent and it sounded like he was just trying to sit in a different seat. The busdriver informed me that if she has to get the teacher for help again Pajama Monster will no longer be allowed to ride the bus, but as we walk to school in the mornings anyway, that would just be an excuse for me to get a little more exercise. On the list of things I'm stressing about, walking 1/4 mile in the sunshine with my kids for the next 6 weeks doesn't even register.

Apart from the decreased violence and the crying over things (which I think may be part of Pajama Monster or Adderall and not Depakote related) Pajama monster has been feeling like a normal 4 year old boy at times. Right now he's playing with the stacking cups with his sister on the kitchen floor. The strange thing is, he's been playing with her for almost an hour. Normally they'll play for about 5 minutes and then the screaming and bullying will start. In short, he doesn't seem sedated or flattened or numbed or zombied or any of the other things I was afraid of. When he's not acting out in his old ways, which he's been doing much less over the last week, he just feels like a very bright, funny, creative and loving little boy. Welcome back, Pajama Monster, please stay!

Oh Please, Please, Please! (Depakote)

Pajama Monster had his depakote level blood draw last Thursday. The level was 40, with a normal range starting at 50. We were advised to increase the dose to 2.5 pills for 3 days, then up to 3 pills. We started 3 pills Sunday. Over the last several days things have seemed better. Pajama Monster has crying/panicked fits over seemingly trivial things, but can be calmed down with patience, especially if I catch it early. I've also been working to really minimize any unexpected changes. I'm not talking about large changes. We've always prepared him for large changes. I mean the small ones such as me throwing away his empty yogurt container after breakfast or vacuuming his room. He seems to need extra warning for these changes or else they can start a crying fit. Other times he hardly seems to notice them. Apart from that, things have been better. We haven't had a poo or urine incident in 2 days. I'm hoping and praying that this will make the difference. He's continuing on the Adderall as the ADHD does seem to be a consistent struggle for him. I'm not expecting that Pajama Monster will have "perfect" behavior. He's a 4 year old little boy. I don't mind that sometimes he gets mad or doesn't want to listen or won't share. That's what I expect. He's 4 (and I realize he'll still do things I don't want him to at any age. He's his own person.). I just want to be able to do the things most other families can do. I want to be able to go to the park and go grocery shopping and let the kids play together in the yard. I want to be able to check on him when he sleeps without being afraid of what I'll find.
If this is enough to stop the destruction and poo smearing and seemingly random defiance then I'm done adding meds. I know many kids have a very complicated "cocktail," but I'd rather handle the crying and need for very very gentle handling around changes without any additional meds. He can function like that, and so can I. That's no judgement against parents who have their children on more complicated cocktails. You have to provide your child with what is appropriate for his or her specific neurology. I'm just hoping that we won't need more. I'm afraid of the impact on Pajama Monster's development with all these meds, but I see the impact of growing up completely unable to function in normal society as worse. As long as he can function, the rest comes down to parenting, as my husband says. I know I'm getting far ahead of myself, but I'm hoping so much that this time the med will help and it won't just be another piece of a mood swing that we're seeing. Our pediatric psychiatrist wants Pajama Monster to continue on the 3 pills for 2 or more weeks and then consider increasing to 3.5 or 4 pills if no side effects appear. We will also do another blood draw to check levels. Oh Please work! Please! Please! Please let this all be over!

The last blood draw was no problem at all. Pajama Monster handled it better than most grownups. I'd laid the groundwork by mentioning there is a policy (my policy) that states: Kids who get blood draws get to go to McDonald's afterwards. Pajama Monster actually began asking if he could get a blood draw so we could go. The actual blood draw caused no more than an "ouch." We of course praised him up and down and then went for lunch at the McDonald's play place. I'm not normally a fan of feeding the kids fast food, but in this case one small McChicken and a few french fries made a terrible ordeal no big deal.

Bipolar Children and Poo Smearing

I've read through a number of books on bipolar children. They all seem to have one brief paragraph somewhere in the book that says something about bipolar children urinating in inappropriate places and/or smearing feces. That's it. One brief statement and they're done. The really comprehensive books may say something like "Little is known about this." That's about all they say on the subject.
Yes! I know he does that! Why?! and more importantly HOW DO I DEAL WITH IT?!!
Well, after much research, I'm still coming up empty handed, so here's what we're doing. Maybe this will be helpful to someone else out there dealing with the same thing, or maybe one of you will post here about a good technique you've tried. I should probably also mention that it isn't just poo. He also pours urine in his heat vent, on the carpet, on his bed, in the window sill, etc. Poo he hides, plays with, or smears on carpet, walls, bedding, windows, curtains, and toys. At this age he rarely has much on his body. It's everywhere else.

Poo smearing can be for 4 main reasons: sexual, attention, sensory stimulation, or defiance. I'm lumping anger in with defiance for the sake of simplicity.
The approach to treating the first 3 is much more straightforward, so I'll touch on them because it makes sense to consider those strategies first. I believe Pajama Monster is the last category.

Sexual: In some cases a child who has experienced sexual abuse will act out with elimination issues such as fecal smearing, soiling themselves, bed wetting, etc. In these cases it's obviously the abuse and not the elimination concerns that you want to be addressing. In these cases the behavior is often also accompanied by other symptoms such as sexualized behaviors, tantrums, nightmares, and possible avoidance of the person abusing them. If you think this could be what you're looking at go see a therapist, and prevent unsupervised contact with anyone who had the chance to abuse, at least until you've had a chance to figure out what is going on. This is a case where discipline isn't the answer. This child needs protection and safety to talk about what has happened. Seek the help of a professional and be sure to avoid planting any ideas in your child's head about what you suspect might have happened with leading statements. Not all poo smearing has anything to do with abuse, but I thought I should mention it because it does sometimes happen.

Attention: This one is just straight up behaviorism. Don't provide any response (I know, I want to scream too!) and provide lots of praise and attention when the behavior is not happening. Have the child clean up as much as is developmentally appropriate, but don't clean with him/her because you're trying to minimize attention. Provide a consequence for the behavior but don't comment on it more than to assign the consequence, and make it clear that there are rewards to be had for those who do not do this behavior. It usually extinguishes fairly rapidly once you're not reinforcing it. The reinforcement is your big reaction. ("Rapidly" meaning about as long as you've been reinforcing it, plus a week or two.)

Sensory: These kids are doing it because the texture, feel, smell, etc. is very reinforcing. It feels great to them to squish things between their fingers or smear it on the wall. For these kids you want to provide a sensory appropriate outlet. Painting with shaving cream on the shower wall or a big piece of paper, washing plastic dishes with lots of gentle soap, play doh, finger painting, paper mache, water play, etc. Continue to do your best to limit chances for poo play and provide appropriate alternatives/redirect. Offer sensory play often, and coach the child on ways to ask for sensory play so they don't get the idea that smearing poo is the way to get to play with shaving cream.

Defiance: This one is where we are, and where I suspect most of the bipolar children are. Pajama monster uses a sock or cloth to grab the poo so that he doesn't have to touch it. He also doesn't always smear it. Sometimes he puts it in his dresser, or in a toy, or in his shoe. This tells me it's probably not sensory. He isn't left alone with anyone except daycare, and I've interviewed children and parents from the daycare, and can pop by at any moment to check on him. He also isn't showing any sexualized behaviors, so this tells me it's not sexual abuse. I've tried and tried with the behavioral route. The behavior doesn't respond at all to rewards or consequences. I can literally offer him a choice between pooing on the walls and having a day of scrubbing his walls, or just playing with his toys during quiet play time and then having a treat and going to the park. He picks poo almost every time. There's no lack of consistency with the rewards and consequences. they simply don't seem to have any impact on his behavior. Since I can't make him stop, and this has been going on for several years now, here's what our coping strategy had been, followed by a discussion on our new strategies and the role of anger in this behavior:

1. We stripped his room of everything but a washable toddler mattress and blankets and a couple easily washable toys.
2. I got a carpet shampooer. If I had the choice I'd just have linoleum in his room.
3. I painted his room in high gloss paint (He got to choose the color...light blue.)
4. I tied his ability to choose his own food and have treats to whether he'd smeared poo/urine in the past 24 hours. (I hate to use food as a reward/consequence, but I'm kinda desperate and I wanted to show that he could have more control if he's made good choices.)
5. When he smears poo I calmly remove any remaining large pieces and give him a scrub brush and a couple of wet cloth diapers and tell him he may come out when the room is clean. Without saying anything else I then shut his door and return periodically to check progress. If progress is made, I praise the effort and leave again. If no progress then I just shut the door. Once the room is clean (anywhere from an hour to a day and a half so far)to 4 year old level of capability, I have him sit in a chair till I finish cleaning. He doesn't get to sit with me or interact with me or play during this time. Once I've shampooed out any bad spots from the rug and wiped off any residual from the walls, he may wash up and return to normal life. Obviously he gets to come out for meals and school and doctor appointments whether he's cleaned up or not.
6. We have a toddler potty in his room so that he doesn't get creative in the main bathroom/ hall/ rest of the house after bedtime. It also prevents the "I have to go potty" every 5 minutes battle we used to have at bedtime. He'd spend 20 minutes playing in the bathroom and then would announce he needed to potty as we were putting him back in bed. If we didn't let him return to the bathroom he'd poo or urinate on his floor, despite having spent the last 20 minutes not using the toilet in the bathroom. If we did let him, the cycle would just continue over and over.
7. I keep a small jar of the paint for his walls and a paintbrush handy to do touch ups when he manages to damage the wall.
8. When he was younger we used several strategies to keep him in a diaper. We would put him in footy jammies that were pinned shut with a diaper pin, not a safety pin. Diaper pins have plastic covered heads that are less likely to come open on their own and poke the child. When the pin didn't work we moved to cutting the feet off the jammies and pinning them on him backwards, or even wrong side out and backwards. These helped for a little while, but my son can disable any childproofing device and nothing will stop him from getting out of his clothes now.
9. I explain the natural consequences of his action, such as no friends can come over because the house smells like poo, or we can't go to the park because Pajama Monster needs to clean, etc.
10. Minimize his chances to do it. Lots and lots of supervision seems to decrease his opportunity. I am especially careful when he uses the bathroom or at bedtime. This doesn't always prevent it because I can't be there all the time, but it does reduce it somewhat.
11. I put a cotton cloth about 2.5 feet down his heat vent. He can't reach it there but it will soak up any urine, etc. that gets dumped down there and prevent it from getting deep into the heat ducts where I can't clean it but will have to smell it every time we run the heat.
12. I make sure that the process of cleaning Pajama Monster isn't reinforcing. He gets any soiled parts of himself rinsed off with cool water from the shower sprayer, then quickly dried off and back in his jammies. We don't do the usual long toy filled bubble bath that he enjoys so much or else the smearing behavior just becomes a way to get a bath, thus reinforcing it.

The new strategy: We're using many of the same techniques with two noteable exceptions. We're no longer having him clean alone over whatever length of time it takes him, and we're no longer tying other consequences after the fact. I'm still expecting him to clean, but if he's not cleaning then I hold his hand and guide his cleaning till everything is done, then we wash up and move on with our lives. I'm not sure if this will work yet, but at this point all I know is that what we were trying wasn't working and I'm not willing to spank him (and also don't think that would help) so that leaves us with this.

When a child behaves this way, and it isn't sexual, attention, or sensory related there is usually an underlying anger component. I know this from my years in the field, but what I don't know is why Pajama Monster is mad. Usually I see this when the parent is on meth and neglecting/abusing the kids or there's some sort of extreme emotional abuse, but we have a pretty normal family, and I suspect most of you reading this do too. Pajama Monster is consistently praised and told that he is loved. He has toys and education and playdates and snuggles. The things that seem to make Pajama Monster angry always center around control, and they're unfortunately usually things I can't give in on. We give Pajama Monster age appropriate levels of control, and choices on almost everything else. I'm willing to problem solve and negotiate, but sometimes I just have to say "No." No, you can't take your sister's ice cream. No, you can't play with the electrical outlets. No, you can't have a sharpie. If I were my own client, the first thing I would be looking at once determining the anger issue is how to give Pajama Monster a sense of control, but in Pajama Monster's case there just doesn't seem to be enough control in the world to satisfy him. If he wakes on his own time and picks his clothes and breakfast and fun activities and lunch and generally has free range to make his own choices, he'll melt down because his sister got to pick the pink bowl and he wanted her to have the blue one (We have multiples of each color. He didn't want pink. He just wanted to make her choices for her.) If I structure his day so that everything is nice and predictable for weeks and weeks at a time, he still gets mad every time a choice isn't his, and doesn't seem to care about the routine at all. I feel like I'm trying to fill a bottomless pit of need for control, and as long as it isn't full there will be anger bubbling out of it. I'm hoping that by switching to a "fix it and move on" strategy perhaps I can minimize the anger a little bit and also break the long stretches of time that Pajama Monster is dealing with poo.

Just in case anyone out there was wondering, I should probably also mention that there was nothing strange about Pajama Monster's potty training. We offered praise and rewards and never gave consequences around toileting. He was given a potty at about 18 months and allowed to use or not use it. It was just there in the bathroom when he felt ready. He was around 3 years old when he was done with diapers, but still wearing a bedtime diaper because he still wets the bed. He's never been scolded for bedwetting. We give him control over age appropriate things such as what he plays with, what he wears and what he eats (within limits of course-no marshmallow and chocolate dinners!). I truly don't know where this behavior came from, but it's been a long and very frustrating struggle.

The Heartbreak of Hope

Pajama Monster started Depakote on Sunday. We increased to 2 pills last night, which will probably be the final dosage. We do the blood test next Thursday or Friday to see if the levels are right. Today has been a great day. He soaked several cloths in his room with urine before I came to get him out of bed this morning, and he's had a couple very brief time outs for things like throwing things in the trash when he knew not to, but that's it so far. Other than that he's played in the yard and had lunch and gone for a "milk treat" at Starbucks, and played at the park, then ridden bikes with his sister. It's very very rare for Pajama Monster to have a day like this, and so I hope. I try not to, because I hope on every good day, and with every new med, and every new therapy or program. I hope and pray and then the next swing hits, and we're right back where we were, and I hurt. I'm trying not to hope this time. It's never brought anything but more pain, but I look into his smile and I can't help but hope, once more, that this time will be different.

ODD, ADHD, Fetal alcohol, and Bipolar, the laundry basket test

This is a little example I use to clarify the differences between the overall feel of these diagnoses. Every child is different, and severity of conditions also varies. This is meant as an example of the flavor of the diagnoses, not a set checklist sort of test. You can read all the checklists in the DSM IV, but really it comes down to feel, so here's how I think of the differences. Imagine you have 4 children. One child has ODD, one ADHD, one fetal alcohol syndrome, and one bipolar. You give each child a laundry basket full of their clean clothes and tell them to go upstairs, put their clothes away, and bring down their dirty laundry. None of the children bring the laundry back, but it's HOW they don't bring it back that shows what's going on. Just because your child didn't do as instructed doesn't really clarify anything about the problem. Here's the differences between the diagnoses as I see them.

The ODD child dumps the basket on the floor and stomps off, or goes upstairs and dumps it over the railing, but either way they're very clearly deliberately refusing.

The ADHD child takes the basket and goes half way upstairs. You find them sitting next to it 20 minutes later playing with a toy. They look at your irritated expression, see you staring the laundry and jump up, clearly surprised that they had forgotten to take the basket upstairs.

The fetal alcohol child will probably take the basket upstairs, assuming they were calm when you asked. When you ask them later why they didn't put their clothes away and bring you the dirty laundry they will look at you in confusion, as though there were no instructions after the first one you gave. Conversation around your frustration will likely skew on random tangents. Alternately they will refuse to take the laundry upstairs, but with reasoning that doesn't seem to line up, such as because her boyfriend is awesome and laundry is stupid and they're going to be super rich because they both want to be rich, so no, she won't do laundry today.

The bipolar child may do anything. Maybe they follow all the instructions. Maybe they throw the basket at you and start an hour long screaming/throwing fit. Maybe they politely take it upstairs, then poo in it. The response varies from minute to minute. The only thing predictable seems to be that something unpredictable will happen on a fairly regular basis.

These are stereotyped examples to show themes, not meant to be taken as a way to pre-judge someone based on their diagnosis. Sometimes by exaggerating the simplicity of the diagnosis you can more easily see which theme is happening within the complexity of daily life. I hope someone out there will find this helpful in avoiding a misdiagnosis.

Diagnosis: A little of everything

I'm sitting here with a copy of the DSM on my shelf wanting to rip my hair out. For those of you not familiar with the DSM, it's a book used to diagnose mental illness, etc. It has codes for all accepted diagnoses and has a list of accepted criteria for each diagnosis. When someone says they have a diagnosis, they mean that they meet all the criteria for that diagnosis listed in the DSM. I've heard talk that the next edition may contain both childhood onset bipolar and sensory processing disorder as new and accepted diagnoses. Here's the full current edition for anyone curious DSM Online

The frustrating thing about childhood bipolar is that because it's new, people are still agreeing on what it looks like. On top of that, it seems to have a very high rate of comorbidity (other diagnoses being present along with it). This muddies the waters in terms of what is generally seen in bipolar, and what is part of diagnoses often occurring along with bipolar. The childhood version doesn't seem to have nice clean cycles as are often seen in adults, and children often express depression through anger and irritability. As if that weren't enough, environmental stressors can make any child extremely moody and defiant as well. In short, it's a nightmare to try to diagnose.

I've hard many other parents echo this, and it's my constant lament: Any of the things Pajama Monster does could be seen as the far extreme of normal naughty behavior if it were the only incident. The thing is, it's not just one incident. It's hundreds, happening very frequently and seemingly without warning. Other kids show signs that they're getting frustrated and then lose control, but my little boy suddenly just smiles as though possessed and proceeds to destroy things.

I've tried so many different diagnoses on for size. He has a sampler platter of so many, but doesn't meet the full criteria for most. He's extremely active at times, but not as much as a child with severe ADHD, and he seems gleeful, not oblivious to the results of his actions. He is rigid in his thinking, but with social skills that clearly show he's not autistic. He meets criteria for ODD (Oppositional Defiant Disorder) but that's just a name for symptoms, not a cause. A diagnosis of ODD will get you insurance coverage in most cases, but is otherwise useless. It's the mental health equivalent of going to a doctor because your throat hurts and being given a diagnosis of "sore throat." You already knew your throat was sore. What you want to know is WHY and how to TREAT it. Before I launch into a list of what's going on with Pajama Monster, let me just give my gut feeling on bipolar childhood symptoms: If it looks like ODD, anxiety, sensory problems, ADHD, and a few autistic features just for flavor, you may want to consider evaluating for bipolar. It doesn't mean that your child doesn't have bipolar AND one or more of those other diagnoses, but it may help in gaining a clearer picture of what's going on.

So, that's my rant, and here's the giant pile of puzzle pieces I'm trying to put together over here.

Anxiety?: He seems to go "Deer in the headlights" when overstimulated or confused.

Autistic features?: He has trouble engaging in structured creative play, such as playing kitchen. He gets locked on certain ideas and can't readily change. He sits and draws patterns for long periods of time and doesn't like things being out of order.

Sensory?: He becomes frightened when upside down and will get stuck on play equipment unless he's done the exact motor activity several times. The school OT suspects poor motor planning. He runs into things and falls frequently and has trouble mirroring actions that are demonstrated for him, such as a jumping jack.

Mood disorder and etc?: Tantrums over seemingly trivial things, extreme defiance and need to control, destruction of property including his own favorite toys.

Just fooling myself?

There comes a time in any parent's life when he/she must make an honest assessment of their child's capabilities. This allows the parent to push for services their child needs, both in terms of providing chances to excel in areas the child is good at, and building skills where the child struggles. For the parent of a disabled child this also often involves grieving the potential we'd hoped our child would have. I've heard parents in denial around this step many times in my office saying things like "when we find the right med and he can understand things..." regarding a profoundly mentally retarded child for instance. That child may grow to be many amazing and wonderful things, but no medication in the world will change the retardation. Despite the need to be realistic, though, a parent must be very vigilant not to pigeon hole their child. I've met many a parent with charming and very verbal autistic children who were told early after the diagnosis was made that their child would never develop language.
I know it sounds noble to say that you're sure your child can do whatever he wants in life and you'll be there to cheer him on, but the truth is, this reality check isn't about settling limits for the disabled child. You should never tell a child not to try. This reality check is about letting go of your own dreams and expectations and accepting your child as they are, for who they are. It's hard to see all their real strengths if you're caught up in fooling yourself about the disabilities. The parent of the retarded child, for example, was so caught up in how things would be once the retardation was gone, that she couldn't advocate for the things she needed in order to function with the retardation. I wasted a lot of time thinking that I shouldn't bother to find a support group or research medications because surely we'd find some star chart or reward that worked and all of this would soon be nothing more than a memory.

My struggle is this: While being truly honest about Pajama Monster's disability and his many strengths, what does this mean for his future? What is the best case scenario? What does success look like? Could my son become a neurosurgeon, a CEO, president? Could my son be a computer engineer, or would just holding down any job be a success for him? It's not that I expect that he will necessarily want to be a neurosurgeon, but I'm wondering if his disability would stop him if he did. What sort of extra supports will my son need long term? Where will he be next year? The answer is, no one seems to know. Maybe the meds will work and next year I'll be pushing for the gifted program instead of working on the IEP. Maybe next year will look exactly like today, with me typing my frustrations out while my son refuses to scrub the poo off his walls. Even hope feels painful sometimes, because it always comes just before the new med sends Pajama Monster into mania or the next swing hits. I wish so much for a glimpse of the future, but even if I could look, I'm not sure I'd have the courage to do so.

A comic that sums it up.

I just thought I'd share this. It reminds me very, very much of life with a bipolar preschooler, expecially the part about potty training. http://theoatmeal.com/comics/tyrannosaur_crack

The Therapist in Me

I feel like I need to mention this, just because I've seen it so often in my practice. Bipolar disorder with childhood onset is a bit of a hot topic now, and is therefore getting more publicity. It's a fairly new idea that a child can have bipolar disorder, and this leads to a boom of diagnosis, hopefully mostly accurate, but because of the newness and lack of familiarity, some may not be accurate as well. Just because your child is acting out, even in the same ways you see listed in books you're reading, does NOT necessarily mean that he/she is bipolar, or has any mental health condition for that matter. Before Pajama Monster was diagnosed, the psychologist did extensive looking at my husband and my own parenting skills, our home environment, the possibility of abuse from home or another source, medical problems, family history of mental health problems and medical issues, major transitions or changes, and longevity of the problem, to name just a few. He did this because it is very often one or more of these factors. A child can appear to be bipolar as a result of poor parenting skills, or medical problems, sexual abuse inside or outside the home, trauma, etc. There are also many overlapping symptoms between bipolar, depression, anxiety, sensory processing disorder, OCD, ADHD, and ODD.
I'm writing this blog to talk about how I'm coping with life with a bipolar preschooler, and all the heartaches and joys and setbacks, but please, please, PLEASE, never diagnose your child yourself! I'm a therapist. I'm qualified to diagnose bipolar in a child, and still I would never have considered making the final diagnosis myself. I'm just too close to the situation. There's too great a risk that I'll see what I want to see and not see what I don't want to see. Beyond that, for the nonprofessional, reading a list of symptoms just isn't enough to make a diagnosis. That's why no therapist will diagnose until he/she has seen the child. It's how all the pieces fit together that informs diagnosis, not just a list of check boxes. We see supervisors and learn over time what the diagnosis really looks and feels like before we diagnose it in others.
I just want to make sure I don't give the impression, by jumping in with where we are today, that we skimmed over all the other steps of diagnosis. They are incredibly important, and unfortunately very time consuming. Be honest with your child's therapist. It's the only way to get an accurate diagnosis, and be willing to wait while all the information is being gathered. It may be the diagnosis you suspect, but then again it might not. I once met a little girl diagnosed with autism because of headbanging, screaming, failure to develop language, flailing motions, no interactive response to other's attempts to speak to her, etc. Autism? Everyone thought so, that is until someone took a look in her ears and discovered the horrendous ear infections she had behind both eardrums. She couldn't learn language or engage in attempts at speaking because she couldn't hear, and the rest of the symptoms were her frantic attempts to deal with the pain in her head and to express her needs without words. The diagnosis isn't always what it first looks like. Take your time and never be afraid to question.

How to Reason with the Unreasonable: An Attachment Parenting Dilemma

I suppose this is my way of saying, how does an attachment parenting Mommy reconcile her desire to reason with her child and avoid compliance through punishment with the fundamental lack of reasoning that comes along with bipolar disorder? Essentially, when Pajama Monster is feeling reasonable, everything is fine. I can explain and negotiate and compromise and life runs very smoothly. When, on the other hand, Pajama Monster is screaming and bashing into the wall in an effort to wake his baby sister, how do I take an attachment parenting stance and still be effective? He's loud enough to hear all over the house, so moving the baby isn't an option. He's beyond reason at that point. Believe me, I've tried every approach to trying to problem solve with him imaginable. He just wants to hurt people and wake his sister and destroy things and consequences and rewards and impacts on those around him are immaterial. He's simply out of his head.
I usually end up putting him in his room and waiting out the storm. I use his room because it's a safe place. We've nailed down the inside of the heat register and painted the walls with high gloss paint. We've filled every little nick or nail hole so there is nothing way to tear apart the drywall. All lighting and decor has to be high enough that he can't possibly reach it, and even the curtains had to be removed after I found him spinning in them till they'd formed a cord around his neck (not self harm, just lack of forethought). I'm afraid of what happens when he's older and can smash his window. As it is now, we often strip his room of all furniture and leave him with a mattress and bedding because we're afraid of him tipping things onto himself and pouring urine behind any furniture he can't tip. This means we have to unscrew the furniture from the wall to clean up the urine.
I've tried telling him after the fact how I felt about the behavior and what the impact on the family was. For example, we had planned an outing to the coffee shop and then to the park, but instead we all had to stay home, including Pajama Monster. When he's getting overstimulated or panicked, I step in early to soothe and help with coping skills, but nothing helps once he's got "the look."

The upshot? How do I reconcile Attachment Parenting with the unusually extreme need for safety? Firstly, I intervene early. I've heard plenty of "leave him be. He's fine. It's no big deal." but it makes the difference between spinning out of control and having a nice playdate. If I let him pour half the bottle of glitter out, then he's excited by the lack of limit and immediately it's 5 bottles of glitter, then he's screaming and trying to microwave the glitter and trashing the kitchen, so yes, I'm the mom who takes the glitter away at 1/2 a bottle puts half of the pile back. It may not sound very AP, but I see it as protecting him from something I know he can't handle, much as the mother of a diabetic child says no after one small cookie. She knows what happens after he has more and she's not willing to put him or anyone else through that. Moreover, she doesn't care if you think she should let him have more cookies. Her child is far more important than the opinion of someone who doesn't understand her child's special needs. My child needs more rigid limits when he's dealing with something new or he becomes unsure, then unstable and destructive. It's not fair, but it is reality.
Secondly, and this is the part I struggle most with, I try to view anything happening after I see "the look" as an involuntary action, beyond my child's control. I frame the time outs as a way of protecting him and the family while he is out of control, not a way for me to get back at him for being bad until I finally break him and he stops. I still expect him to take responsibility for cleaning up his messes, etc, in the way an adult would pick up items from a table he/she had accidentally bumped into. I still explain the impact of his actions, e.g. "You can't be alone with your sister because sometimes you lose control and hurt her." Ultimately though, I still view him as fundamentally good and worthy of unconditional love, and I let him know this. Yes, I still lose my temper at times, but this is my goal: to show him that I love him, fundamentally and completely, regardless of his behavior. He's likely to encounter countless negative responses to his behavior as we struggle with his illness. He needs to know that while his behaviors are often unacceptable, it is not him that is unacceptable. He is loved, just as he is.

The Medication rollercoaster

My husband and I didn't want to try medication for Pajama Monster. We were worried about the impact on his developing brain. What if things don't develop as they otherwise would because of the meds? What if he grows to be dependant on them? We stuck it out for a year of therapy before we finally broke down and agreed to see a pediatric psychiatrist. I should note at this point how lucky I feel that there was a pediatric psychiatrist available to us. They're not nearly as common as regular psychiatrists and there are a lot of nuances that they need to know in order to effectively deal with little ones.

What changed our minds? We finally decided to try medication when we felt we'd tried everything else available to us, and when we were certain that we were trying it for Pajama Monster and not to make our own lives easier. It's one thing to use medication to help a child and quite another to use it to avoid having to work hard at consistency, praise, setting limits, rewards, etc. We finally realized that Pajama Monster was starting to be the "bad kid" in different settings, and we began to look at what this would mean for his developing sense of self. What does it do to a person to try their hardest and still always fail, and fail so spectacularly that people don't even want to be around them? How does it feel to constantly elicit negative responses from those around you for something you can't control? I can't force him to live through that, and to begin to see himself as "bad" if there is something, anything I can try to help him.

It has been quite a roller coaster so far, and the ride just goes on and on. I can't tell you how much I want off this ride. The worst part is knowing that there may not be any "off" to the ride. It may be that no med or combination will work. Each time we try a new one we not only have to wait for it to build up to level in Pajama Monster's system, but also for Pajama Monster to be at level long enough for us to see if it's the med or just another mood swing that is creating the change. Our strategy has been to always choose the med with the least side effects that looks like it might work, even if another med might be more likely to work. It makes for slow going, but reduces the risk that we'll end up with a med that is stronger than we need. We've also drawn the line at anything that seems sedating. If Pajama Monster doesn't seem like Pajama Monster anymore, we're just not going to use that med, even if it does settle the fits and mood swings. We meet with the psychiatrist every 4-6 weeks with several e-mail updates in between. It's been a long and heartbreaking ride so far.

Here's our wild medication ride to date:

Prozac: Takes weeks to get up to level in his system. High hopes, but no results. It just didn't seem to make any difference at all, so we discontinued.

Adderall: This helped. It took some tweaking to get the dose right, but at least he seems able to process instructions and consequences. He's still moody, defiant, has fits, etc, but he's a little less wild about the defiance.

Zoloft: Never showed much of a result, but broke out in a splotchy, itchy rash, so discontinued.

Celexa: This seemed like it might help for a little while, then he went absolutely bonkers. we took him off it after a 4 hour stretch in which he destroyed several toys, ripped the ivory off the piano, smeared diaper cream and saline all over the house and his sister, ransacked the diapers, removed and emptied all his dresser drawers, took and hid his sister's food, scratched up the paint on the walls, and was sitting in his room excitedly and very rapidly talking to himself about all of this. I think that's when he used his heat vent to smash holes in the drywall too. not a good fit for him.

Lamictal: This one started out OK, but rapidly seemed to push him manic as well. We stopped this one after he stabbed his sister in the back of the throat with a fork.

Depakote: This one is sitting on my counter now. We're supposed to begin it Monday and increase in about 5-7 days. It does require a blood draw, which isn't going to please the Pajama Monster, but it seems like the safest med in line that we could try next.

Wish us the best with this one. I really hope, each time that we'll have found the answer. Prayers are always welcome.

What a Bipolar child looks like

Well, for starters I had to stop between the title of this post and the text to go see what the crash was. He had tipped over his dresser, breaking his cubbies because he was mad about being in time out.
The real answer is, everything! The bipolar child looks like everything. He is sweet and angelic, creative, funny, anxious, loving, charming, violent, destructive, malicious, and cruel. I brace myself in the morning before I open my son's door because I don't know what's on the other side. Every child is (*CRASH* It sounds like he flipped the dresser again. I'm not standing it up again this time.) different, but I think most parents of a bipolar child will tell you that they have one thing in common: THE LOOK.
It's a change in the eyes that is hard to describe. The look is the sign that your child is well beyond reason. He or she will not be swayed by reward or consequence and something very very bad is about to happen. In my son's case it's a sort of ecstatic grin with a crazed manic laugh. I love my son's real laugh. It's one of my favorite sounds in the world. This isn't the same sound. It's a frantic, crazed laugh and it means I have about 3 seconds to get him to somewhere safe before he starts world war III.
For the parent, we live in fear of the look. We watch for it constantly because we know that it can come at any moment, without warning and catching it early is the only way to minimize damage. If you're not familiar with a bipolar child this probably just looks like an overprotective parent making something out of nothing. It isn't. The look is very real and unmistakable. It means the little sweetheart who has been so nicely playing and sharing has left, and in his place is a child capable of almost anything. It means our child is about to have one of those moments that everyone says, "Oh no. He's such a good boy. I'm sure he wouldn't do something like that." about.
I hate running errands because I know that there is a very good chance that my son will flip while we're out. There's nothing like trying to pay for groceries while your son is emptying the contents of the cart onto the floor and shrieking with glee. Worse still are the times he starts smacking his sister because he knows it will take me a moment to get her safely out of the cart and away from him. What should I do? I have no one to watch him and we need groceries. I can't hold his hands while I'm paying, and I have to pay before we can leave. At home he'll smear poo on everything, pour urine into the heat vent and everywhere else, scream "Help! Help!" out the window, color on walls, hide dirty diapers around the house, trash the fridge, assault all of us, scream, destroy, and generally be as rotten as he can be. Except when he's not. Sometimes he wants to read stories and color and snuggle and play in the yard. It makes me want to scream and cry and tantrum right along side him.

If you want a glimpse of my life, I suppose Monday pretty much sums up life with Pajama Monster.

Monday we woke, had a nice morning, sent Pajama monster to preschool and then had lunch. Overall ok with only a few defiant acts, etc. Then Pajama Monster decided to feed Baby Peep a few bites of her noodles. It was nice seeing him being so loving toward her and I thought I had enough time to run downstairs and set a vase in the cupboard. I had just reached the cupboard when I heard the scream. Apparently Pajama Monster had fed Peep a couple of bites and then rammed the metal fork straight into the back of her throat. He later said he did it because he was mad that I had gone downstairs. When Peep calmed I could see two bloody punctures in her throat, and couldn't tell if there were more further down. We rushed to urgent care. While there Pajama Monster set about trashing the room we were in, throwing supplies in the garbage, yelling rude things at me, etc. I finally buckled him into one of the chairs. Angry, he hit his sister then cheerfully announced that he was going to wet himself, and did. After tipping any furniture he could reach and several more attempted assaults he announced that he was going to poo himself, and did. I rushed him to the bathroom where he danced around gleefully chanting about poo. He then spent the next 30 minutes pinching me and hitting me while we stood in line at the pharmacy for Peep's antibiotics. At one point he tried to it me, slipped into the wall and screamed for the world to hear, "You hit me so hard I'm going to die!!" We finally drove home. At home he then ate dinner and hopped into bed, kissed me goodnight and went to sleep like a little angel. Peep still has the sores in her throat, several days later, but they are healing nicely and aren't likely to cause her any further discomfort. Still, I'm haunted by the realization that becasue I left the room for less than 1 minute, my baby could have been killed. Since then, I never leave them alone for even a second. It's exhausting and I'm going out of my mind. I have to follow them if they leave the room and take them with me to use the bathroom, check laundry, grab my hairbrush, get something from the pantry, everything. That, I believe, is what it means to live with a bipolar child. Every moment is spent coping with their illness or planning for it. I fantasize sometimes about what it would be like to just let them play in the yard for a few minutes and know they're safe. I wonder if I'll ever know what that's like.

Drive-by parenting advice

I'm sure it's happened to most of us. We're struggling to deal with a tantrum or saying no to a cookie or just minding our own business while grocery shopping when suddenly we are the victim of a drive-by parenting attack! Whether it's the old lady telling me that I should put those bananas back because they're not organic and the pesticides will irreparably harm my son, or the woman telling me that I shouldn't tell him not to throw things because he's a good boy, they all go beyond bad manners and into the realm of dangerous.
Dangerous? Yes! The mother who is the victim of this parenting assault is one of two things. She is either a loving mother who is doing her very best to handle the situation, in which case the drive by criticism only makes her job harder and increases her stress, depleting her coping skills, or she is an abusive mother who really is a danger to her child. If she is an abusive parent then all you have done with a nasty comment is make her angry. She can't safely take that anger out on you, so guess who is going to suffer for your action? Rest assured that that child is going to receive much worse treatment as soon as she gets him alone. If a child is in danger do take action, but make it an action designed to help the child, not just make you feel high and mighty.
I've been thinking a lot about these drive-by parenting advice givers, and here's my fix:

1. If you are a drive-by advice giver: look at why you are doing it. Are you trying to help, or do you just enjoy making yourself feel big by putting everyone else down? If you just enjoy criticizing others, go find someone to slap you till you're over it, or go find a therapist, your choice. Let's assume you're not a selfish jerk and you really do want to help. Look at the situation. What do the mother/child actually need? If she's truly hurting the child, they may need child services intervention. In those cases a snide comment will endanger the child further and provide no positive change for anyone. It's probably time to look up the number for your local child services program and explain the situation to them. If, as is usually the case, the mom is just dealing with a tantrum, maybe she needs someone to help her push the cart out of the way while she restrains her little one, or someone to help her pick up the oranges he just threw out of the cart. If she's talking to her child and no one is getting hurt, maybe she just needs to be left alone. Only offer advice if you truly think you know something she doesn't. For example, there's a changing table on the other side of that clothes rack, or his foot is caught in the stroller. Advice like "organic is much better" or "that swaddle is too tight" doesn't qualify as useful info she isn't aware of. Next time you're thinking about offering some completely unwanted parenting advice, imagine how you'd feel if I suddenly appeared in your kitchen, chewed you out for your lousy sense of decor and poor cooking skills and then disappeared. Would you find it helpful? No. I thought not.

2. If you are the victim of unwanted parenting advice: Don't let them finish it. You can greet their "You know, boys like that need..." with a big smile and a cheery, "Oh good! Are you here to help?" Most people will look very surprised and murmur some kind of yes. Now is the time to give them a task. "Great! I need paper towels, and a 5 lb bag of potatoes. You can drop them off with me in the soup aisle." or "Great, you can push the cart to the checkout for me while I carry my son." (Obviously you never have them interacting directly with your child.) Any time they balk just repeat, "You said you wanted to help. This is what would be helpful." Eventually they will either slink away embarrased, or help you finish shopping. If they truly wanted to help, you have given them something helpful to do. If they didn't, maybe they'll think twice before offering their next piece of unwanted drive-by advice.
Ok, you've survived a drive by incident. The final step is to take a minute and honestly consider how things were going at the time of the criticism. Wait till you're calm and not feeling defensive. You know your child and all the factors at play. Do you think you could have handled things better? If yes, do your best to correct what you can and make a plan for next time the situation comes up. Drive by advice can be truly painful, especially when you're dealing with a disabled child who looks "normal" and everyone is sure it's just your incompetence leading him to act out. It hits every raw nerve and usually comes when your child is in the process of hitting them too. I've often had to restrain myself from saying, "Oh, do you have $130K of education in children's mental health? No? I guess it's just me then."
No matter what, remember to be true to yourself. When all else fails, I remember a story my mother once told me. Apparently, when I was about two I kicked her while we were grocery shopping. Shocked, mt mother said "Why did you do that?" Immediately she was beset upon by not one but two drive-by parenting experts. One woman laid into my mom for not spanking me immediately for my bratty behavior while the other chewed my mom out for speaking to me too harshly. It just goes to show you can't be what everyone expects, so forget about how they see you and just focus on being a good mother.