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.