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.

Antidepressants Are a Beautiful Thing

Our boy has done a complete 180 degree turn during the past week. He has gone an entire week without a single tantrum (by which I mean no hitting, punching, throwing things, threatening to hurt himself). That is probably the longest he's ever gone since being with us. He's been happy, smiling a lot, telling us he loves us a lot (unsolicited statements like "I love you, Ima..." or "I love spending time with you, Mama..."), and totally fun to be around. He's earned new privileges, he's talked about his feelings instead of acting out, and he's been pretty much like a "normal" kid with fairly severe ADHD. He's had no aggression or violence or angry outbursts. It's pretty incredible.

Family life has been a total joy lately, which is such a relief from the constant struggling of the last 4 months. There have been difficult moments, things are far from perfect... but they are so, so much better. I think the Prozac is working, and allowing the therapy to be more effective... which is giving credence to our belief that Big Guy's violent tantrums were not just behavioral but instead were due to a combination of anxiety, depression and PTSD. He's only been on Prozac a few weeks, and just this week we upped the dose, so it's possible things will get even better from here. I can't help feeling like I'm waiting for the other shoe to drop - How can this be real? How long can it last? But I'm also starting to let go and just enjoy these times... and giving him loads of positive feedback about how awesome his behavior is and how much fun he is to be around.

Big Guy told us last night that he's being good so the judge will let him go home. It broke my heart to hear him say that, because it means he really still thinks he was removed because he was bad and he can go home when he's good. But it was a good opportunity to let  him know that being happy and being well-behaved will help him in every aspect of life, no matter where he lives. Whether he goes home or is adopted, he will have a better life and more privileges if he can behave respectfully and he feels good inside. We reminded him he isn't in foster care because he is bad, that he's in foster care because mommy has problems parenting (problems she is working on right now), and that we can't promise that good behavior will mean he gets to go home.

At first I was worried that raining on his parade like this might make him start acting out again, but my dad reminded me that there's no way that Big Guy was able to keep up such amazing behavior for an entire week purely out of willpower so he could go home. If that was the case, he'd have been on perfect behavior from the beginning of his time here. I think he just had an easier time behaving the way he'd like to behave because he's less depressed and anxious, plus he's been working in therapy on internalizing that hurting us isn't going to make him be able to go home. When he saw his behavior being so positive, it may have renewed his hope that now he can have enough self-control that he can behave well at home so that mommy will want him back and the judge will send him back. So I don't think he's going to regress simply because we are giving him reality checks about his power to make the judge send him home to mommy. He looked so deflated after I corrected him, I wanted to cry.

We knew from the beginning that "Oppositional-Defiance Disorder" and "ADHD" didn't fully encapsulate what was going on with this child. I'm so glad we finally found professionals who agreed that we needed to dig deeper into the psychiatric issues. Big Guy is happier, calmer and so much more focused. I feel like a weight has been lifted off of me. Even if it's temporary, it's a huge gift. Times like this remind me that all this hard work is worth it. And you know what? In the (unlikely) change that he does go back home to mommy, who is so limited in so many ways, I think it would be great to send him back as a happier, less aggressive, more well-adjusted kid who is easier for a cognitively limited mom to parent. I finally understand what foster parents mean when they say that they get satisfaction out of reuniting with their families a healthier kid who's done a lot of healing and learned new coping skills.

Dear G-d

Please let the new psychiatrist we are taking Big Guy to today be kind, good at listening, and full of ideas. Ideas about what is going on with him and what to do about it. Please let her take seriously the fact that he was up for 1.5 hours last night afraid that he was dead ("can kids be half-dead?" he asked my partner), that he'd have nightmares if he went back to sleep, and that we were going to die (he kept saying "I love you, mama. I really love you, mama" in a scared voice over and over to my partner... which is not normal for him). He said his heart was pumping blood really fast and "beeping" really fast (he thinks his heart beeps, not beats). He was a wreck. Please let the new psychiatrist take seriously the fact that our house is in danger of being destroyed during his rages and that we are in danger of being hurt. Please let her understand that he has a gentle and sweet soul, which is why he gets so depressed when his behavior is out of control. If she has more clarity about diagnoses, great. But I care less about diagnoses than that she can do something to help take the edge off for him so that he can work more productively on changing his behaviors and coping better with his feelings. A kid who is so anxious they are refusing to go to sleep (or waking up 10 times during the night like he did Sunday night) and is so out of control that they fly into physically violent rages is not in any place to be doing productive work in therapy. We aren't big on medicating kids, but this child is clearly not on the right meds right now and he is suffering. So please let this woman be compassionate and insightful, and have some idea of where to go from here. My sweet boy deserves this.

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.

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.