Well, Emma was accepted into the outpatient program. She prefers to call it “daytreatment”, likely because it sounds like daycare. I think I’m starting to get the gist of this. Her time here is really more to get a baseline for them to help make the recommendations of what we can try to do at home and at school, as well as what medication shifts to make, etc. It also helps plug us into new therapy options, get testing done, etc. in the end, it will help lead to improvements. But the few weeks here in and of themself are not necessarily miraculous. (I may be wrong. I’m not sure I really know what’s going on.)
I don’t handle waking up at 4:15 very well. And I’m struggling to find resources for myself. My big question to the team here at the NSC was this, “If my daughter is in such a state of crisis that she is here at the NSC, doesn’t it make sense I am in a state of crisis too? If there is a child in HERE, the only reason the parents wouldn’t need mental help too is if they are already receiving it.” They were a little doe-eyed about it. I have a new mission, more about that at a later point in time.
I wish I had more to write about, I am sure you are curious. But it’s just like this… I drive. I check her in. I tell the nurse and check-in lady how her evening and morning were. There may or may not be a parent meeting. I go to the cafeteria, where I zone out and do something until 2:15. This may include talking on the phone, trying to read a book (highly unsuccessful lately). Lots of trying to collaborate future appointments and therapies for Emma, watching some of her assessments, meeting with her team of Drs, working on her new home schedule and point-and-level system, cards for the schedule, etc.
I’ll be honest. I do a LOT of aimless staring out the windows while sitting in a chair. Last week I did hours and hours of mindless Facebooking. I’ve gone off FB for a bit, so, none of that this week. Anyway, I sit and wait for Emma until 230. We drive home. I manage her until she goes to bed, around 7. Then I watch an episode of House with Ryan while we eat, I get stuff ready for the morning, and I collapse in bed. Voila.
Oh, the drive sucked last week. Until Sunday night when they cancelled outpatient for Monday due to a stomach bug. Any of you guys know about autism? How do they like change? Ha ha ha! Needless to say, I enjoyed driving to Denver yesterday. (Glass half-full) 😉
I’m on my iPad right now in the cafeteria. Insert photo here:
I can’t really write well sans-keyboard. I’m like Anne Shirley without a proper pen. 😦 I feel old today.
Doctors want to know when this downward spiral began, and strangely enough, I can only answer really with her date of birth. I realize that sounds somewhat fatalistic or hyperbolistic or something like that, but I’m not really exaggerating. It’s not like we’ve had some sort of graph showing some nice ups, some good plateaus, etc. Overall, life just seems like some sort of downward spiral that seems to change color and spin. Bad things come and go, skills change and grow. She learns new things. We all change. But I can’t say that there has been any sort of reprieve more than a week at a time from the challenging behaviors, overall aggression, and ongoing anxiety. They don’t really like that answer. They want something more helpful that they can easily correlate with a medication change or a shift in my family life. I don’t blame them; I do too.
The downward spiral tightened and shifted intensity mid-October, with increasing rage, a lower grasp on reasoning and logic, and physical maladies/hypochondriism taking over on an hourly basis. December was awful. I didn’t go one single day without a phone call from the school. I had to leave early many days, several days I literally could not get her to even go to school due to some sort of real or perceived physical malady. Her foot hurts. Her back hurts. Her throat is killing her.
(This is screamed, raged, loudly and insistently-whined. Think meltdown, anger, pain. But sometimes will walk around a few minutes like everything is totally normal and nothing hurts at all. Then sometimes mid-pain meltdown, start raging and melting down about something completely and totally unrelated and totally illogical, random, like, “WHY WON’T YOU GIVE ME HIGH HEELS!!!!” or “I NEED A SMARTPHONE!!!!” Do not read this calmly:) “I need an xray! I need to go to the hospital! I need to see the doctor, call 911 now! I am in so much pain! I can’t handle it, call 911, now! I need to go to the emergency room! Take me to the doctor now! Take me to the doctor!” (crying, sobbing, whining, raging, hobbling, clutching body parts, dragging me around, etc)
I cannot physically manipulate her, and there are no threats to make her go. One day, the meltdown that lasted for hours over going to the doctor was so insistent I finally just took her.
I sat in front of the doctor, holding my head between my hands because by that time my head was killing me, “Yes, doctor, she says her back hurts. No, I’m not sure there is anything wrong with it at all. I couldn’t get her to go to school today.”
The onslaught of verbal attack when I ignore her malady is just horrible. I’m the worst mother in the world. I hate her. She is going to tell everyone how horrible I am. I don’t care about her, I never did. She should just go die. She should just go kill herself now, because even her own mother doesn’t care about her. Because everything hurts, and her very own mother doesn’t even care about her pain. She is going to tell everyone about it.
“Why wont you just take me to the doctor! I can’t handle it, I need a doctor! Now! I need an xray! Now! I need the emergency room! Call the doctor! Now! Call the doctor! Call 911!” Again, like before. Rage. Anger. Pain. Meltdown. Random meltdowns about miscellaneous other things thrown in for good measure, like glitter from hell. Fucking demons always messing with stuff. Then she’ll be doing things and walking around, and I swear, her foot/arm/leg/back MUST be fine. It’s enough to make me think I’m going insane.
Im rambling. This stuff is just a small part of the awfulness that’s been going on at my house lately. The random pain and fits about the pain and trying to get her to go to school amidst the pain. The pain does happen at school too, the poor school nurse and front office staff…. >>sigh<< They deserve medals. I try to bring them baked goods when I can. I should do more. I just can’t. I should do more for Emma, my husband. I should do more for myself, because I’m falling apart, but I can’t.
So. Random insertion: Imagine for a moment that you are married to a veteran. (Together 3 years, not her father) Yeah, this dude, he’s really a decent man. He’s got a good heart. He’s actually pretty reasonable, and very logical. He’s got PTSD, he deals with things from a pretty even keel. Especially since I encouraged him to start some meds that have helped with automatic fight/flight response. Anyway, so, here I am. I’ve got this guy that has served 2 tours in Iraq. He’s helped pick up his buddy’s body parts. He’s cleaned up some blood, brains, held bleeding friends. Sorted out dead bodies, it’s a part of the deal. He’s been injured, blown up a number of times… I forget the count, over 20 IEDs. He doesn’t brag, but these things are under his skin. And here is my daughter (on a daily/hourly basis) running around screaming and raging in my face with her imagined broken ankle as she curses me and tells me I’m the worst mother in the whole world because I won’t call 911, acts like she can’t possibly walk or carry her bowl to the kitchen from the table one minute and then run around with the dogs the next. Yeah, it’s stressful. He holds it all in check and just walks the other way. It’s small, but I just thought I’d express another small element of the whole ordeal.
There’s so much to explain.
Christmas Break was a nightmare. She spent most of it trying to break her legs, break her ankles, threatening suicide, wanting to die, and telling her dad and myself to fuck off. In between throwing hysterical fits wanting to know why she can’t have an iPhone, a fin-fun-mermaid-tale, and a $500 silicone baby doll. She hates herself and me, and everything sucked. She had no interest in drawing or stamps or any of her usual crafty stuff that she would have spent hours entertained with a year or 8 months ago. She wants to eat about 900 pounds of food a day, and rages when I don’t give it to her. She made numerous attempts at breaking her ankle, tried to run away once, and told some extremely scary manipulative lies regarding her self-injury attempts. She physically attacked her teacher twice in the two weeks before break. She threw herself off the top of her bunk-bed at least two times.
Long story short, over the last 10 days, we made 3 separate trips to the Children’s Hospital Emergency room, trying to get her into an in-patient psychiatric program for treatment. After nearly 24 hours total spent at the ED, Emma was admitted to the Neuropsychiatry Special Care inpatient unit.
That has been horrible and good. I’m telling you now folks, if you’ve never committed your child, you have no idea the roller coaster of mixed emotions. I’m so thankful and grateful to have the help and support. I’m so glad she was able to get in. I’m glad that they are so good there, and that she is relatively happy and being treated so well. I have hope that in the end she will get some sort of treatment that will help save her and my sanity, and therefore our family life.
AT THE SAME TIME, oh my god. The guilt. And I’m just so incredibly heartbroken! It’s like there’s a part of my spirit that will forever be so sad that my little girl is not okay. It’s not that she’s abnormal; I don’t give a rat’s ass if she doesn’t fit in. I don’t care if she stands out, doesn’t assimilate, etc. It’s that she’s so incredibly unhappy, miserable, in pain and constant suffering. It’s that her world is intolerable, awful, abusive (she feels) so much of the time. I don’t know if I will ever just ‘get over’ having a miserable disabled child.
Fuck. I never thought it would boil down to this. Give me an ugly, disfigured child. Give me mental retardation. Give me feeding tubes, shitty diapers, enemas. I don’t care.
But the rage, hate, and HORRIBLE UNHAPPINESS.
I am always heartbroken that my child is so damn miserable….
Anyway. She is there, at the hospital. At the bizarre form of Emma Disneyland (she loves hospitals, being that medical stuff is still her #2 autism obsession and she thrives off the attention/etc). That was last Tuesday night, this is Monday. I saw her Wednesday, Thursday, Friday. Not Saturday. Her dad visited her on Sunday. I was supposed to see her today, but the roads were so bad I had to cancel. I told them she could call me from 12-1 when I was supposed to visit. She didn’t call. I want to cry. Why didn’t she call me? Now I’m crying. Fuck.
I will be there tomorrow, I have an appointment in the afternoon and will visit her before the appointment. I think they might release her tomorrow, if not – likely Wednesday for sure.
The goal is for her to do the outpatient program once released. That is IF (Oh, please say yes,) Medicaid approves for her to attend. The outpatient program is every day from 8:30am-2:30pm mon-fri. This would be for approximately 3-5 weeks or so, there isn’t a definitive timeline, as it depends on her progress. I wouldn’t be able to work during this time, and that sucks big time, as I will obviously have no income. I’ll also have to drive, and eat out while up there. I’m trying to see if we can stay at the Ronald McDonald House while there, too. It’s $20/day, but the driving to/from will kill me. The good news is that my work informed me over the weekend that they will hold my job for me until Emma’s treatment is done. I cannot tell you what a relief that is; I’m so incredibly fortunate!
I have a lot more to write about all of this, about what is going on with me throughout this process and the last few months, about Barnes and Noble, about Emma’s obsessions, about blogging, and some more. But I have to stop sometime.
At the moment, I’m trying SO hard to see this glass has half-full, because it’s so easy for it to be half-empty. Thanks for reading. Hope this wasn’t too boring. I feel like I kind of just rambled on and on. Adios.