Being Here Now

It’s very hard to play catch-up when there have been so many ups and downs. So, instead, I’m just going to tell you where we are at right here and now. *note: the last 3 months might not seem ‘here and now’ but in the big picture, it is.

In the past 3 months we’ve seen:

-2 more inpatient admittances to the NSC Unit at The Children’s Hospital
-Auditory and Visual hallucinations
-A pain disorder, involving over 3 weeks combined in a wheelchair
-Physical aggression that is uncontrolled
-Elopement
-Cutting and other forms of self-injury

Settings for all of us have changed:

-Emma has been placed this year in our local BOCES School of Excellence, in what is called the Liberty Program. It’s a special program for children with a dual diagnosis of autism and X (usually Intellectual Disability). To give you an idea of ratio, this program serves 19 school districts. Her class consists of grades K-5 and has a total of 9 kids it it. It’s the most supportive learning environment that I know of for the most challenged kiddos in 19 districts. Last year she was in a self-contained affective needs classroom with some of the most amazing staff that could ever exist. They were fantastic, but the year was only somewhat successful due to her increasing rage and emotional regulation issues. Hence, the move to BOCES.

-At the beginning of this school year I terminated my full-time Special Education Teacher position, and took the part-time position at the school where I teach. Emma’s physical, emotional, and therapeutic needs were looking rather overwhelming when taking the time and commitment that the full-time teaching position requires. (Note, this does not by any stretch mean that we are truly financially capable of having me only work part time. Only that we saw that full-time was not going to work, and lucky for me there was a part time opening at my school.)

-We moved to Fountain, Colorado into a beautiful house, my son moved to California for a job, and my husband got a new job with a much more rewarding company.

This last quarter of life has been truly exhausting. Emma’s daily life at school consists of multiple de-escalations, restraints, seclusions, and injury all-around. Before anyone gets their hackles up, as a SPED teacher and very protective mother I can tell you without any doubt – they were all necessary and done with all of the patience, care, and professionalism due. Unfortunately, her inability to control herself require those things to happen. Regardless, nothing can really prepare a mother for the bruises that a restraint can cause. You save your tears for later, and calmly question her, “If you were having a safe body, would this have happened?” (no.) “Do you think that they wanted to do this?” (no.) “Do you think they like doing this to you?” (no.) “Do your teachers care about you and want you to be safe and happy?” (yes.) And it’s all true.

Later on in bed you can cry a little as you imagine the pavement being ground into your kids face while multiple adults keep her from kicking, running into traffic, or punching another student in the face. It’s not fun, and it’s not fair. But it’s reality.

Anyway, I’ll talk about this week.

Monday was our long-anticipated visit to Dr. A$$. We had been waiting for months to be seen by our new psychiatrist. I’m not going to spend the time right now explaining the details of the visit, but it was not successful, I was not impressed, and we won’t be going back. I took her to school at noon and by 1:15 I was getting a call from her teacher. Calm, supportive, but letting me know that they’d already had 2 incidents and she was currently in a seclusion after a restraint. I went in to pick her up, and she was still in a state of escalation, complaining that they were trying to choke her (again, not true, but her feelings about it regardless). For those that read the sentences prior and don’t have experience with “it”, I will fill you in. This is Emma, all 230 pounds, charging like a maniac after someone for no reason. Kicking, tearing, hitting, screaming and saying very mean things. Cursing. She will send you to the hospital, she is NOT in control, and she is not a little kid. There is no logic to appeal to when she’s escalated. If you don’t work directly with people with similar challenges as Emma, you would be terrified at her coming after you. Restraint means multiple adults having to get her arms and legs under control. No, this isn’t a cops episode, but if you’re imagining that its extremely charged, physical, and aggressive – you are correct. It is a horrible thing. Two of these in an hour and 15 minutes. Great.

Tuesday I drive her to school because she isn’t set back up on the bus after last week’s incident… Oh, you know, the morning she attacked another student that was provoking her, and then attacked the bus aid that tried to step in between them? I’m not sure about the details, but I was called by the police to come and get her at an intersection in a residential area of town. Emma was running around the neighborhood in the snow when the police got there. I got her from the back of the police car and took her home. But I digress, that was last week, I’m talking about THIS week right now.

Tuesday was better than Monday, without any seclusions, but still multiple, severe ongoing issues.

Wednesday (yesterday) was a real doozy. She got on some kick that she needed to bring her brother’s old skateboard to school. I said that wasn’t going to work, it was a big meltdown. She ended up leaving the house and running away. She came back, and then the physical attack on me started. It was heartbreaking and horrible, and there just wasn’t much for me to do. I finally got her to school, and spent a while crying. I wished I could have gone to work for the last 2 hours of my expected shift, but I really couldn’t see myself ‘peopling’ at that point. I felt like a hallowed shell. I got Emma from school, she had multiple incidents at school including restraint and seclusion. She was in process of trying to run away (elope) when I got there. She was a hot mess. Literally, sweating from the exertion, and not in a logical state of mind. It just plain sucks is all I can say. I cannot fully express how hard it is to remain calm and optimistic, realistic, and yet truly accept the experience at hand. There’s no way to really do it. Minimalizing the experience is the only tactic that really works.

Today, Thursday was our first day back on bus service. She got off the bus and staff was smiling and ready to take her immediately to her preferred reward – swing on their playground with the special swing. She didn’t even get inside the school without incident, as she bolted toward the back of the school, picking up big rocks, cursing, and threatening to throw them at staff members heads. She may have thrown some, I don’t know. Running around the parking lot area, it took 6 staff members to eventually get her under control and into the seclusion. When I showed up, she was still not “back to reality”. She tried to bolt again, and I can see she’s literally been tearing the seclusion room apart. She spits at people and throws styrofoam in their faces, telling them “Fuck you!” I can’t stop looking at the muddy, sooty marks on her legs and her ankles from her experience outside.

When talking with staff after we got Emma calmed down, staff expressed to me that they really aren’t equipped at BOCES to handle Emma and keep her safe. It’s true, I totally get it. But I’m dumbfounded. I thought this was the last stop, I guess it’s not. I’m not sure what else is in store for Emma right now…

She’s staying home with me until Tuesday when we meet with District and BOCES staff, because she just isn’t in a state to be controlled or safe. The last thing I want is her bolting and getting hit by a car, or sending a 1st grader to the hospital. I don’t want to get her out of a police car again, not this week, please. I don’t need any more bruises.

After leaving school, we went to Aspen Pointe to see if I can get a new psychiatrist. There are currently no medications to help assist Emma in emotional regulation or etc, we’ve run the gamut. But regardless, we need a psychiatrist. We need everything we can get at this point…

I’ve found myself saying over the past 6+ months that the autism isn’t the real game changer here, it’s the mood disorder. I’d take a little autism any day of the week. The DMDD is the real buzz kill at our house now. I’ll fill you in soon about Emma, what she’s like, and some of the sweet and funny things that she does that brighten my day. There are small rainbows that dazzle. There are some things I’ve learned these last 4 months that other parents might want to be aware of. However, I just felt that in order to get back into blogging on here – I just… I don’t know. I just needed to start somewhere.

Here’s to Friday at home with her tomorrow, hopefully it’s a nice, un-eventful day. Where I don’t get paid. Again. >>sigh<<

Emma and I enjoying hot tub moment Monday after school to chill out together. Quality time. ❤

Emma on Monday, post meltdown and seclusion, enjoying a moment at the park.

Advertisements

NCU Chapter 2

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:

image

I can’t really write well sans-keyboard. I’m like Anne Shirley without a proper pen. 😦  I feel old today.

Status: Inpatient :(

15747604_10154139245091630_321103759666634680_n

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.

20160907_202800
The Victim

 

 

(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.

Anyway….

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.

20161006_203453
The Husband

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 30 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.

Random Tiny Clip Emma: NEEDED HEELS RIGHT NOW

Does that make any sense?

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.

Here’s something more happy to leave you on:

Video to go with the above photos: Emma and her Mermaid Costume

14732185_10153931719191630_2578731634940940697_n
A good moment at Grammy’s House in October, 2016