Status: Inpatient :(

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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.

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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.

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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 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.

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

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A good moment at Grammy’s House in October, 2016
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On Sharing

I recognize that a small part of my hesitation in sharing these less-positive parts of my life come from the feeling that it’s like a horrible car accident people are driving by. MY car accident. I’m on the side of the road, my underwear shat in, my car is totaled, and no one driving by can tell if it’s my fault or not. My hair looks awful and everyone around is crying hysterically as papers, dirty laundry, and other belongings thrown from the wreck hang all out for passersby to see. It’s ugly, and it’s personal; I am on fire.

You can’t help but slow down to about 2 MPH and get a good look at the gong show as you drive by with your own little traveling circus, because mine is so rich with it’s own unique awfulness. That’s for the people whose lives have never been routinely and in-depth affected by a person with an emotional and developmental disability. “Wow. I had no idea that’s what [it] looks like.” Meanwhile, I’m still kind of trying to pretend that I know what I’m doing, and living a normal life.

That’s what blogging about my life and my shit feels like, in some ways. It’s extremely humbling. Yet I don’t want pity. And even though I don’t want anyone to talk to me about it, I’m dying of isolation – I want people to talk to me about it. All the time. I can’t win.

And for the people that read and do have some idea of the different levels of hell I deal with on a daily, weekly, or monthly basis [they have their own road-side car accident, and are on fire, too] I fear judgment. I fear that my hell is WAY better than their hell. I feel that no one can really understand, and so sometimes the idea that someone thinks they might understand is annoying and frustrating. It makes no sense. None of it.

When it comes to my family, same thing. I wish that they really knew what I was going through. What life with Emma was really like. The insanity of her sweetness combined with the hysterical demon-self that ravages our lives. Yet, when they really understand – I DON’T LIKE IT. I want them kept in ignorance: maybe things are okay. Maybe Daleth is okay. It’s almost as if I need my family to have that hopeful inkling that things will turn out ‘normal’ someday and keep that thought alive FOR ME, because there is no way that I can personally keep that hope alive right now. And if I fill them in about my life, they might lose that hope too — and then who will keep that torch burning?

One of the reasons I’ve avoided blogging and talking too much about my life with Emma is because I’ve worried it will affect my career. (insert laughter here, please.) Well, my career has been ended, at least for the moment, because of Emma’s needs. Another reason is because I worry that friends, family, and co-workers will pass judgment on my ability to function and be present for them. That they will …kind of… find the strange parenting life that I have and my stresses as too much of a delineation. That perhaps we just don’t have enough in common [because of my life with Emma]. This is probably an irrational fear, stemming from an experience as a pregnant teenager dealing with losing my high-school friends. I recognize. I process as I write this. That’s why I’m doing this.

It’s like, if people see how broken my home life and mental state with my daughter really is, they will think that I MUST be as broken as she is, and treat me like I am disabled too.

*hmmmm.

Well, this week, I feel a little bit that way. Ask my husband and my two sisters. I’ve been living in a war zone. I’m feeling damaged.

I promise that future posts might possibly have more of a point, and content, and something to be gained from reading. Thanks for being here.

 

This Blog Reborn: You Have a Choice

Greetings readers and followers from the past…I am back, and I’m here to stay. However, I’d like to make it clear that you have a choice to make about your mental involvement with this blog. I am not exactly the same person I was when this blog was created and you started following it (likely you are not exactly the same person, either). Also, this blog will not serve exactly the same purpose it did before.

I am not here to share multiple fruitful blessings and gains, celebrate successes, and share my cute little tricks on how I got my daughter to wear socks or eat some stew. I’m only here for me. Because I am the only one that CAN be here for me about this, and it is through writing that I can serve myself as a support. Times have been hard for my daughter, and – of course – this means that they are very hard for her parents and family as well. Part of the reason I stopped blogging is because I felt so down and negative about it all. I am NOT a happy camper. No one really wants to consistently hear about my shit. It’s not a way for other autism parents to move forward with a positive attitude. *but, again, I’m not here for anyone else anymore.

It’s me, and my sanity, in a warzone against the raging forces of Emma and her constant battle for happiness in her irrational, unpredictable world of pain and victimization.

Please read my disclaimer page and know that I really mean it. I curse, I vent. You may find yourself written about on here. That includes my family, friends, co-workers, ex-husband, sisters, mother, daughter, son, etc etc etc. You get it. It’s my life. I’m simply opening the door to exposure because I need people to read what I write. I can’t explain why it helps, but again, it’s all I’ve got.

Thank you for being here for me, I have many things to write about.

small circles

One thing I’ve recently absorbed, is that nearly everything really does change. With the exception of lack of sleep (which is a big deal), many of Emma’s challenges have morphed. Even slight change leads to new feelings of elation and at times desperation. But hey – at least its a new desperation.

It’s forcing me to come to new alignments with parenting, patience, positivity and hope. I mean – to really internally register that “XYZ” won’t be  in its exact same form forever is liberating. I know that there are certain actions that we, as parents of a child with autism, may have to deal with on a long-term basis. But I’m focusing on all of those other things…

I think the trick to “the allowing” is to do your best to SHHHHHH- fear responses. I’ve found that I try to protect myself from further disappointment by fearing the worst. That “XYZ” will NEVER change, that it will get worse, that it will be bigger and heavier and stronger than ever. This same protective fear doesn’t allow me to appreciate when things lighten in a certain area. I sometimes don’t even see my little reprieves, because I’m fearful of it changing back – or turning into something WORSE.

Here’s a funny example: Emma went from wearing only dresses and sometimes pants, to suddenly only wearing stretchpants (leggings). This has become very problematic. After about 6 months of this, I went ahead and got rid of a bunch of new jeans I’d gotten her. Why wait? Several weeks later, she suddenly wanted to wear JEANS. Of course, right?!?! I found myself just fearing that she’d go to ONLY wearing jeans, and not any of the 900 new pairs of leggings we’d gotten her. I saw $$$, I saw fits, I saw my daughter refusing to wear another pretty dress.

But this new little voice speaking let me know that it’s all right – – It’s okay to enjoy progress. It’s okay to celebrate her victories. It’s okay to take a big, HUGE  >>sigh<< of relief that a behavior might be going away, however momentary.  There are always new challenges. But I’m discovering that preparing myself for future challenges by NOT enjoying current victories is really short-changing and ineffective.

NOT that any of you ever do that, with your autistic child, typical child, or any other part of your life. Heh-heh!

Anyway. Enough introspection. Whatsup here????? Well, I’ve been very bad at posting, obviously. For those that don’t know, I’m working towards my bachelors degree at a local state college. This last semester I had to take 6 classes at once, four of them studio classes. Translation = CRAZYTOWN. I’ve also been working hard with some very impressive and dedicated women in Oregon on our new non-profit, The “A” Team Justice League, AKA “The A Team” (You can find this group on Facebook). Lots of details we are still working out, etc. I’d love for you all to check out and befriend our website at www.theateamtoday.org. I’ve also edited and produced our second publication of LoveABLE News. ‘Folks with autism in your lives (and those that don’t!) PLEASE check out this newsletter. It has so many hysterical articles, and some wonderful perspectives, reviews, etc. You don’t have to live in Oregon to enjoy and participate; I live in Colorado!

I was working a bit on the website, and decided to throw all of my blogroll on there. They’re all great, wonderful, articulate people dealing with autism in their own or kid’s lives. It suddenly made me SO homesick! I miss reading everyone’s words, and lives, and used to feel like I knew what was going on with the peeps. But it’s okay. I’ll be a loyal reader/commenter again, hopefully soon.

Emma is just growing like mint. 🙂 She’s cute, cuddly, and as non-negotiable as ever! She’s really making some great progress. She can write her name sometimes, and has started drawing some figures. She also made up her first song last week, it goes:

“Momma likes peanut butter, Emma doesn’t.” (refrain)

So cute. Two days ago she started switching Momma and Emma around, for humor effect, I was really impressed and have to tickle the stuffing out of her when she does it.

Her anxiety and OCD issues have increased drastically, but hey, that’s for another post. We’re sticking to the positive right now. Right???? Lots of love to my loyal readers. Love you all!

LoveABLE News, and really loveable kids…

THERE. I did it. I edited, created, worked over and otherwise single-handedly brought the A-Teams newsletter to life. There are some great women in the group that came up with a number of the to-be-regular columns. I really enjoy how each person’s character comes through in the writing, it really was a joy to work on. It was also challenging; I have never worked with Adobe InDesign, and also felt hindered by the CS edition limitations. Regardless, it’s a beautiful thing, and it moves me closer to my personal goals of transformation.

The newsletter is at: www.dalethmccoy.com/loveable_news .  I hope you will take the time to read through the articles, and I also hope you will ignore my ridiculous error in my “letter from the editor”.  Isn’t it amazing what missing one little word can do?

And on to my extremely loveable kids. R took his “alive at 25″ class, and now we just need to get him in to take the test for his driver’s permit. I find that tremendously exciting. Terrifying, yes, he has some real challenges. But how could I possibly let his enthusiasm go unappreciated? I think that we will have fun with this.  He wants to join the Cross Country running team this fall. I’m impressed, it’s the first time he’s shown interest in any school sport. I’m hoping that he really explores and benefits from it.

He’s 5’10”, a full 2 inches taller than me. Taller than his biological father, and it makes me wonder just how tall he is going to get! His step-dad’s genes must be rubbing off on him a little bit. 

And Emma, little [huge-47lbs] Emma.  She’s really taken off this summer. Her teachers and therapists will be so impressed when she starts working with them again. Her language ability has jumped tremendously. She is a little more interactive verbally than she was in the spring. Her mega-meltdowns have decreased a bit, and she is becoming a little better able to express what she wants/needs/etc. before escalating to tantrum. How wonderful!

But as natural as the human condition is, you can’t expect it all to be good. The potty training is getting downright depressing. I thought that it was going well, but it ends up that there are times where she just doesn’t care. She’ll pee on me, the couch, floor, bed, bean-bag, whatever. She just doesn’t notice or care. She has also been developing a strange dislike for using the toilet (big or small) and will hold it in. I have to force/bribe her to go to the bathroom (and that’s on a good day). Other days, it’s just one accident after another.  Needless to say, we are using pull-ups more regularly now than 3 months ago. Maybe when she goes back to school she’ll get into a better mindset about it.

One thing that drives me crazy about myself, is this “ROAMING STATUS” that I seem to have set up for myself. It’s a never-ending mental status search to figure out exactly how high-low functioning she really is. Emma is such a little anomaly. And I know that this quest is meaningless, but I just can’t seem to stop.  She does many things that “Low” (termed by their parents) functioning children do not do. And yet, there are things that “High” (termed by their parents) functioning children do that she has no interest in.

It’s just me. I just want to KNOW. I want to be able to gauge her capacity, like I am my thyroid. It’s at 3.9, therefore, ingest 75 mcg. every morning.  You know what to expect. I hate getting my hopes up about how normal/typical she might be becoming, only to have her turn around and be a complete-total-pissing-weirdo. (said with love, folks) And yet, I will not sell her short – she might have amazing capabilities that we just haven’t tapped into yet. I WANT to give her the chance to be typical in every way she can/wants to be.

All I can do is love her, and try to tune out my Roaming Status as much as possible. It’s expensive, and wastes brain-power. 😉

Anyway, back to the mundane. I’m cleaning my house, getting ready for my in-laws to come visit with us and then take care of the kids while DH and I take our belated honeymoon in Monterey, California. OH, yes, and it’s also for my super-amazing art seminar I am going to, “Weekend With the Masters”. School starts in 5 days. And I would love to just sit here and write……….

 

Because It’s True

I’m laid up. I had foot surgery last week. Everything went well, I’m in no pain, but I can only spend 15 minutes of every hour with my foot NOT elevated. And that 15 minutes includes no contact with the floor. It’s not easy to get around!

This whole time could have been an absolute nightmare, and it hasn’t been. My dear mother, who is ready at the drop of a hat to help her children whenever possible, came down to take me to the surgery and help with the ensuing chaos.

And believe me. My house is chaos. Between me being grumpy, Emma’s insistent nature and house-destroying abilities, and my incredibly messy house… I think we about did her in. 🙂 But she was here, with grace and [usually] patience, to ask me if I needed a drink or a kleenex, or a pill, or anything my heart desired.

If only everyone was so lucky!

Summertime and Dinnertime

Hmmmmm…..

I’ve spent the last two weeks transporting Em and myself [and my momma, that was kind and valiant enough to join us!] to and from Denver for her intensive feeding clinic. It had its ups and downs – but I tell you – she ate! If any of you out there have a child with restricted diets and eating issues, and would be interested in learning some of what we did, please let me know. I’d be happy to share! 

We also got to take her to the Zoo.  She enjoyed the animals for the first 30 seconds, and was then in total and complete awe of the strollers, babies, and curbs/sitting benches to climb and jump off of. 🙂 I took lots of pictures though, because she did SEE the animals, and might be really happy to look back and talk about it later. She has a really great memory, so we’ll see.

I’ve been cleaning my house and trying to get some semblance of normalcy before my foot surgery in < two weeks. Emma has been having a BLAST lately, in absolute heaven. We go outside, she plays in the mud and the kiddie pool. She helps water the flowers and plant new ones. She changes her clothes every 5 minutes. She runs outside to pee in the grass. {Yeah, I know, not the greatest thing} There are underwear and pull-ups all over the house and property right now.  Ha ha ha ha! 

She’s continuing to broaden her vocabulary and language ability, which is wonderful, mostly. It’s when we’re having dinner [or whatever] and she starts screaming at us to “STOP TALKING, BE QUIET!!!” over and over, until we eventually DO shut up that I wonder.  😀

Her play and imagination skills are also vastly improving. No, they still aren’t anywhere close to ‘normal’ or typical… but they do exist, and are rapidly increasing. What more could I ask for? [besides a mute button]

Sunshine is here. We’re all pretty happy…

On a last and final note, food for thought… would you give up your child’s disability? The chance for the same ‘chances’ as any other child? For reaching expectations? For more peace and security????  BUT, would you be willing to give up the incredible uniqueness of your child? The poignant lessons they bring to others? The fact that your child is never forgotten, never leaving a person untouched and unchanged? What would you ‘lose’ if you lost the ISSUE? 

I dont know, I don’t have any answers. I just found myself in a very very strange and confusing place [emotionally] when trying to consider this question.  I couldn’t say one way or the other. Isn’t that WEIRD?????

Any other parents out there that have a non-typical child, how do you feel about this?