Seizures and court hearings.

Warning: This post is long, but I would feel so appreciative if anyone took the time to read it and share their thoughts or words of support... or even just prayers.
 
Little Guy has been with us for 2.5 weeks and it's been a total joy. Except for when he started having seizures, unexpectedly, last week! I was sitting in the waiting room of Big Guy's pediatrician's office, waiting for Big Guy to go in to have his hives checked out. He'd woken up with horrendous hives all over his body and I kept him home from school. The baby was sitting across from me in his stroller and started to shake. I thought maybe it was shivers from a fever, but when he started blinking his eyes and scrunching his face over and over, and his eyes would sometimes roll up 1/2 way and then he looked drunk afterwards... I was so scared that I ran crying to the receptionist and said someone needed to look at the baby. That office doesn't even take Little Guy's insurance, but the doctor who usually sees Big Guy was fantastic and checked him out pretty thoroughly. He diagnosed it as a febrile seizure but said that we should either make a neurologist appointment or take the baby to the pediatric ER to have him checked out. We chose to go to the ER. They sent us home, saying that if it didn't happen again in 24 hours than there was no need for any follow-up or EEG, but that we should bring him back if it happened again. Well, the next day he didn't have any fever at all... yet it happened again. Long story short, he spent the weekend (Fri-Mon) hooked up to an EEG and Sarah and I traded off staying with him 24/7 and staying with his brother. It was really scary and stressful.

While in the hospital with the baby, we got to meet Little Guy's dad Gerald. That was fascinating (he's so much older than I expected!), and in some ways reassuring since at tomorrow's hearing the court may well send the baby to dad. It's a little less scary now that we have a face to put with the name and we have seen him interact with the baby. Patty also visited a lot and was grasping at straws to try to blame us for the baby's seizure. E.g. "You said you wash his hair once a week? In our culture we only wash hair once a month. Maybe that's why he is having seizures"... and so on and so forth. Nevermind that the baby has fine, soft hair that's not at all like mom's thanks to a) him being a baby and b) his dad being part white and part American Indian in addition to being Black. His haircare is not going to be exactly like hers or the rest of her family's, but I'm not sure she's aware of that. Of course earlier in the same day she was complementing how we did her boys' hair and saying she wished she could do it so well!  I feel for her because it makes sense she'd be concerned about whether we know how to take care of Black childrens' hair and skincare needs, but she was grasping at straws because she had no control. She usually trusts us pretty well (enough to place her baby with us voluntarily!) but we also learned that, as CPS had warned us, she can often twist peoples' words. To be fair, her baby was sick, she's paranoid and has a low IQ so everything is scarier and more confusing for her than it would be otherwise, and she doesn't have custody of him so all she can think is that if only the baby'd stayed with her this never would have happened. But she also showed up unannounced, and woke the baby up when he was already asleep for the night (needless to say he hardly slept that night). She called all the time. The nurses told us she called the hospital at midnight because she was freaked out. We both have a lot of empathy for her, but we were so underslept and stressed after being with the baby for days at the hospital that she was really just contributing to our stress and we ended up having to set limits with her about when she should call and when she should visit and for how long.

So, the hearing is tomorrow that determines whether Little Guy stays (at least until the January hearing) or goes. Either the judge could say that dad still has to jump through certain hoops to be able to get the baby, in which case we'll have him at least until January when they will reconvene and reevaluate... or he could go to dad tomorrow or Friday. Because of this new medical info (seizures) and all the follow-up that needs to happen (MRI, etc), as well as the neurologist's concern about the baby needing an Early Intervention evaluation due to possible developmental issues, I chose to call his lawyer. I filled her in and she implied that she would be arguing for him to not go to dad yet, especially given this new information. She certainly said that they would need to make sure whoever the baby's with can meet his medical and developmental needs. In the meantime, we are making the appointments he needs and if dad takes him I'm going to ensure that CPS gives him adequate info about what a seizure looks like, how to administer the medicine we were given if the baby has one, the importance of controlling his fever, and the dates and times of the appointments that we made.

CPS is going to argue for the baby to go dad, but it looks like the baby's lawyer may argue for him not to go yet. Angel, our caseworker, says that the judge is the same one who sent Little Guy back home (see bullet point #7 of the post that link sends you to) early in the summer due to lack of proof that the baby was being neglected or abused, and the fact that the removal was really because mom called CPS saying she couldn't handle Big Guy's behavioral issues. This judge is unpredictable and CPS never knows how to predict how he'll rule. So we're holding our breaths and trying so hard to trust that the kids will be okay even if they are separated. This is so, so hard. I don't know if I'm more worried about the baby or about Big Guy, who is doing so well but could really be set back by this huge loss of having his brother taken away again. I have to believe we'll all be okay. I have no other choice if I don't want to fall apart.

My baby's coming home!

Hoo-boy. I haven't been updating because life events have felt so overwhelming and huge and I've needed a break from being submerged in Emergency Management Parenting (I should trademark that) 24 hours a day, 7 days a week... a break I've had because Big Guy's been in the hospital. That hospital stay they said would probably be 3 days? Well, it turned into 2 weeks. Baruch HaShem, he's coming home tomorrow. I think they probably kept him there longer than they needed to, but ultimately I think he did really well there and the psychiatrist and other staff seemed really good. He's had a med adjustment and everyone feels he's ready to come home. I'm finding that I'm nervous about him coming home - Will he be angry with us? Will his behavior revert? Will the bonding that was happening before he left be erased and we have to start from scratch? But we've stayed a very active presence in his life, visiting whenever we can, talking to him about what fun things we want to do with him when he comes home, telling him how much we miss him and trying to get him to acknowledge the behaviors that led to his hospitalization since he still seems to be in denial about them. We've done everything we could to reassure him that hospitalization wasn't a punishment for bad behavior, and that we were eager to have him home with us again.

I've missed Big Guy so much and I'm glad he's coming home despite a little bit of fear. The plan is to pick him up tomorrow evening and then take him out to dinner, then come home and do the bed routine. We'll see how that works. Often he does better in environments that are not our home, so going out to dinner seems like a good way to ease him into being with us and being out of the hospital. Friday we're going to the beach with my sister, her girlfriend, and my parents. I'm really looking forward to that. I tend to hesitate to tell Big Guy what we're doing the next day in case he a) sabotages it purposely or b) unintentionally acts out to an extent where we can't take him to do that particular activity. So most plans remain a surprise until the last minute. However, I think tomorrow night I'll let him know we're going to the beach Friday because he's been looking forward to it all summer. He's never been to the beach! Besides, it's not a "privilege" that I would take away from him - It's something we've already planned to do, and he behaves really well around my parents, who he adores. So (famous last words) I can't imagine anything happening that would get in the way of us going. 

Things we've done while Big Guy has been gone:

• Scrapbooked all day with Sarah - What a gift! I thought I'd never scrapbook again after the insanity of the last 2 months
• Taken a late-night trip to the huge WalMart that recently opened near us (I hate WalMart as a company and dislike giving them my money, but being broke will make you do crazy things sometimes)
• Cooked tasty food from scratch
• Slept late... sometimes very late
• Gone pee without worrying about closing the bathroom door at night - Funny how one notices the littlest things!
• Went through the house getting rid of books and other stuff in order to make the house look neater and to make more room for Big Guy's toys
• Lots of cleaning
• Paid a lot of bills and done a lot of paperwork that I wasn't getting done when Big Guy was home
• Did a lot more work (for pay) than I got done during the entire rest of the summer
• Bought Big Guy some cute clothes for school
• Slept in some more
• Did those things that couples struggle to find time to do when there's high-intensity kids around
• Got taken out on a really lovely date for my birthday

This love.

The love I have for this boy is so overwhelming sometimes. We've been bringing Big Guy food from (blech) McD*nald's or B*rger King when we visit. He knows that we don't eat at McD*nalds or B*rger King because we keep kosher, and we don't take him there. We take him to a kosher fast food place sometimes, and we have our relatives and his mentor take him to eat non-kosher fast food now and then. So when I brought him a Kids' Me@l from BK at the hospital, he was shocked. He said "But you're not allowed to go there!" He was horrified at the thought I had gone there - LOL! I didn't want to tell him I had actually bought the food for him, because I had a feeling that would mean when he got home he'd expect us to take him there. So we told him his grandma and grandpa (Sarah's parents) bought it for him. This made him very happy. He was equally thrilled when I told him his other grandma and grandpa (my parents) missed him a lot. "They miss me a lot?" he repeated, with an eager look in his eyes. "Yes, baby, of course they miss you! They love you!"  He is so impacted by the unrelenting love and positivity he's been getting since moving in with us. His self-esteem is very low and he doesn't really believe he deserves to be loved, but when we deliver a hand-written note from one of our friends or relatives each time we visit, telling him how much they miss him... you can see how happy it makes him. When we tell him how much we love him, or that grandma and grandpa can't wait 'til he comes home so we can go to the beach... his eyes light up. He's just so, so lovable. I pray one day he will know that and feel that.


Yesterday's visit went swimmingly. Big Guy was hilarious, sweet and funny the whole time. He made us laugh so hard with his running commentary while we played cards. We called my dad and he spoke to him for a little while. He let me stroke his back while we talked, whereas last time he wouldn't let us touch him at all. He even let us hug him goodbye, though he was constantly worried someone was looking through the window and would see him hugging us (horrors!)  He seemed happy and calm. It doesn't feel as scary to have him in the hospital now that he's telling us he's happy there, now that I see that he's doing well, now that we've talked to the psychiatrist and feel that he's sensitive and competent. The gut-wrenching fear I had on Thursday night when we brought him to the hospital has been replaced with something calmer and more hopeful. But I miss him. I miss him so much. Who knew that after two months you could be so in love with a child that it hurts to be away from them and all you want is for them to come home, even though the day you brought them to the hospital they'd hit you hard with a wiffle ball bat?

The good bad news

Today's "good bad news":

The psychiatrist finally returned our phone calls. Sarah spoke with him and said he sounds good, was respectful, took our concerns seriously, and said that he is absolutely not discharging Big Guy this week and without any med changes, contrary to what the social worker had told us yesterday. He thinks Big Guy will probably come home towards the end of next week. This makes me really sad because I miss him and don't want him to have to be away from us for that long. But it is also a HUGE relief because the idea of them sending him back home with nothing having changed whatsoever was terrifying, and I couldn't believe they weren't taking seriously our concerns about his depression (which he's not being treated for currently), his dissociation, etc. Sounds like they are now taking those concerns more seriously, and they do indeed plan to start med changes today or tomorrow. Some of what happened yesterday was likely miscommunication - Social workers are often not filled in by psychiatrists on what their plans are. But some of it may also be the additional info we provided the social worker yesterday about the abuse history that Big Guy has been talking about increasingly, the dissociative-seeming episodes he has after some of his meltdowns, etc.


I'm sad Big Guy will be in the hospital for so long, but I'm glad there's some hope that some change can happen while he's there. In particular, they'll have time to see if med changes make any difference for him. Explaining to him each time we visit why he's not home yet despite his good behavior is going to be hard.

Update.

Big Guy is still in the psych hospital. We made peace with our decision once we saw that the unit is really quite fine and the staff is really nice, and though Big Guy refused to see us the first time we visited (he was really angry), he's seen us each subsequent time and seems to be doing well. Yesterday he said "it's fun here." Um, psych hospital FAIL. It's not supposed to be fun, buddy! But I'm glad he's not miserable, I certainly don't want him to be suffering.

So Big Guy is okay, but I still have steam coming out of my ears right now. They are refusing to alter his meds because they haven't seen the behaviors that we hospitalized him for yet. They say "we don't want to rush things, it might take a while for us to see them" but when we asked them how long they keep most kids for they said "7 days." Um, it's already been 4 days. So basically they are making it sounds like they're going to discharge him on Thursday, with no med changes, no aggressive or self-destructive behaviors observed, and basically it'll just return to business as usual at our house. They said something like "Well, a lot of times it's behavioral issues that need to be dealt with in the home, not psychiatric issues." Seriously? So in the meantime, while we deal with the "behaviors", it's totally normal that we spend hours wrestling him to keep him safe? It's totally acceptable that he's trying to run into traffic, and that he sobs for hours on end, that he can't stop his outbursts and then feels horrible about himself and asks us to beat him, and that he becomes dissociated after his tantrums? We can fix all of this with good parenting?

Even if we could fix all of this with good parenting, we need to keep ourselves and our belongings and this sweet little kid SAFE while we get more services in place to help with behavioral interventions in the home. We are approved for 2 hours of therapy and 2 hours of behavioral assistance each week, but he couldn't even make it to his next appointment last week! The neurologist said he needs to be under the care of a psychiatrist, but he couldn't even make it until his psychiatrist appointment! Even if these issues were more behavioral than psychiatric, if he can't behave safely while we continue our behavioral interventions, nothing is going to change.

BTW, the psychiatrist hasn't returned our calls and didn't show up to the meeting. So the only info we have is filtered through a social worker, who's not the one who makes any of these decisions. I've had it up to here.

How we ended up in the psych ER

Yesterday neither Sarah nor I could work because it took two of us to keep Big Guy safe, and even then he was hitting and trying to jump out the 2nd story window, and things like that. This is after a week that included him running into the street and refusing to come back to us (once on a street that had little traffic, once on a street that has a lot of speeding traffic)... Having tantrums every day... and saying things like "Do you hate me? Do you want me to die?" in a sad little voice while in the bathtub. His tantrums just escalated and escalated. He broke a lamp and threw a lot of our (and his) belongings across the house. He cried, he yelled, he threatened. He refused to leave the house every morning. But the worst part was that he is so, so sad. And so, so frustrated with himself.

For a kid with ODD it can take a LOT of sadness for it to come out as child-like (i.e. appropriate) tears and sobs rather than just angry wild-animal tantrums. But we've had a lot of both recently, and we knew something was not right. Obviously we don't know what "right" is with this boy, since he's only been with us 2 months so far. But we knew something was different than usual in the way he was acting. The difference was that he was excessively sad and even his acting out seemed to stem from that instead of just from testing. In addition, he was unable to stop his tantrums, or recover from them. Instead, I think as he'd start to come down from them he'd start to realize what he'd done (in other words he'd perceive that he had physically hurt the people he loves, destroyed his room, made us upset, exhausted himself, etc) and then feel so bad about himself that he thought he deserved to be punished... So he'd act out even more, seemingly trying to get us to punish him. We have gathered that he thinks he deserves to be beaten, kicked out, or have the cops called on him. So "punishment" means one of these extremes, which are the things he is accustomed to. When I have told him during his tantrums, "Baby, you deserve to feel good. You deserve to be happy. Please stop punishing yourself,"... his response is things like "No, I deserve to feel bad. I deserve to lose all my privileges. I deserve bad things."

I called Big Guy's care manager, and said that our rope was really fraying and we needed help, pronto. I explained that being held hostage by this child, and having him continue to try to harm himself or us, was not an option for us... but that we did NOT want to give up on him, and didn't want him to think we were going to abandon him when the going got tough. I said I didn't know what to do. She quickly recommended that we take him to the psych ER for an evaluation. He hasn't had a psychiatric evaluation in quite a while and when we tried to make an appointment, we couldn't get one until the end of September. We have tried to convince his doctors to tweak his meds, but they hemmed and hawed over it. What the care manager explained is that in the psych hospital he can stay for a few days while they change his meds. It's easier and safer than going through med changes while living with us, as they can observe him carefully.

I really didn't want to do this. I was so fearful he would hate us, that it would set him back in terms of his progress emotionally, that it would undermine his trust in us, that things would be worse when he got back to us instead of better. But I called all the people I know who have professional and personal experience with this stuff, and they all reassured me that it was the right thing. As I said to the caseworker "This really isn't about his behaviors. His behaviors are unmanageable right now. But it's really about the fact that he deserves to feel better than this." It is physically painful to see your child hurting and unable to talk about it, and unable to stop themselves from acting in ways that get them further into trouble emotionally and in terms of family consequences.

The horrible part is they don't have visiting hours today, so our boy is going to think even more that we're abandoning him. We're trying to get through to the psychiatrist to fight for an exception to the rules due to his history of abandonment issues and his being in foster care for only 2 months with us, because we think not seeing us every day would be very damaging for him. But they haven't returned our calls.

I wish I could stop feeling like I've failed him somehow by needing to take him to psych hospital. I wish I could stop feeling like a bad mom because I couldn't magically handle his behaviors and help him feel better. I know better than this. But my brain hasn't yet convinced my heart that we did the right thing and that he'll be okay, largely because he has two dedicated foster moms who can't wait for him to get out, who will advocate for him to no end, and who would do almost anything to help him continue to heal and grow.

I broke my own heart last night.

The hardest thing I've ever had to do was to leave my screaming, sobbing, scared, sad little boy at the psychiatric hospital.

We spent 9.5 hours in the psych ER last night, listening to mentally ill and drug-withdrawing folks screaming and talking delusionally (the guy in the next stall kept yelling things like "Why does everyone keep ignoring me? What am I, a criminal? Did I murder someone? I don't remember!") Oy. Anyway, they ended up admitting him. The psychiatrist was very nice and explained that she really felt that he needed to be there for a few days and they needed to look at his meds. She agreed with our suspicions that he is on too much ADHD medication which is making him more aggressive than he would be otherwise, and that it might not be good that he's not being treated at all for depression. We'll see what the child psychiatrist thinks.

I am so, so sad. I miss him terribly. This hurts so bad. I feel like I betrayed him somehow. I will never forget his despair when we left him last night. I pray that he can get some help feeling better. As I will continue to remind him, we cannot wait until he is home. We are not abandoning him, though I'm sure it feels that way to him because of his life experience. But we cannot allow him to be in danger and putting us in danger, and he needs professional help in feeling less out of control.