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.
Too much time has passed to adequately fill you in on the last year+ of life with Emma. There has been change, and much has stayed the same too. We still have: -Challenges, -Ups and Downs, -Good Days, -Bad Days, -Times we Laugh, -Times we Cry, -Late Nights, -Tired Eyes, -Broke Backs, -Happy Hearts, -Screaming Tirades, -Loving Hugs, and Autism.
I’ve been wondering exactly how to ease the upcoming subject into my post without alerting any autism-ma’s and pa’s about the material. Why? Because a year ago, I would have started reading one of my favorite blogs, and gotten to a certain point where the dreaded initials are typed, and started to fade out. “Crap,” I might have thought, “there goes the neighborhood!” I would have likely been annoyed at losing a blog that I thought was maybe going to remain sane, down-to-earth, and not jump on the Autism Bandwagon that I detest so much.
(Phew. Okay. I said it. Are you still here? Still reading? I hope so ~ Because it’s become a part of our lives, and I’d like to tell you my little story about it.)
Emma has ongoing digestive issues, like many children with autism. She also had many stomach aches. We went in to see a GI specialist about a year ago, and he took an x-ray. He said she was so full of poop, and impacted/etc, that it was causing her ‘leaking’ and tummy aches. He told us to do this GI cleanse, and then put her on a daily dose of Miralax.
“What the hell else?” I thought to myself during and after the appointment. I tend to be pretty honest and straightforward. I told the GI guy that I just didn’t see myself being able to implement this for at least several weeks, but that I’d give it a shot when I could. He thought that was incredibly rude of me, but I didn’t care. School, Driving, Autism, Not potty trained at the time, and all the other stuff going on led to constant overwhelm and an inability for me to take on anything new, especially a committed regime like daily Miralax. Let alone the cleanse he recommended. So, time went on… And in the end, Emma was ‘going’ every day. I felt that things were probably moving along just fine, as she didn’t seem constipated any more. We solved potty training (mostly, more about that another day). Whatever.
Stomach aches ensued, we ended up going back to him in February of this year. He did an x-ray. Showed her “backed up like a freight train,” (his words, not mine) and he then got very irritated with me for not having taken his advice. He said that he would not see Emma again unless we did the GI cleanse. >SIGH<
So. GI Cleanse. It involved putting my daughter on 48 hours of clear liquids only, and on something like 8+ cap-fulls of Miralax. Oh, By the way, did I mention that her behavior had gone completely out of control? She had become increasingly violent, angry, aggressive, you name it. She was screaming horrible things at us that we had no idea where she got in her head, like, “I’m going to BURN YOU!!!!!!” and “I want you to go get SHOT!!!!” and etc. She was attacking us physically, and …life was hard. So. I anticipated 48 hours of physical abuse. I went and spent over $200 I didn’t have at WalMart buying games, toys, new playdough, etc. I figured I’d better be ready to take on anything and keep her very, very happy.
We started the cleanse. The cleanse went on. She ate about a million popsicles, and I got her every kind of soda and juice imaginable. She only asked for food 3 times.
(Do you want me to repeat that?!?!?!)
She never broke down. In fact, she was nicer and better than she had been for a long time. There was no violence, minimal tantrums, no heavy meltdowns with head banging. I didn’t get kicked or hit. I only opened 2 of the toys I bought.
And I wondered first, Who replaced my child with this new and improved unit? Was there a recall I missed? And I wondered second, What in the world is my daughter eating that would cause such a sudden change?
That’s when I knew we’d better go ahead and give the GFCF diet a try. It wasn’t sugar or food dye affecting her, that’s pretty much all she’d been consuming for 48 hours straight. My husby and I decided we’d test one full month and check in with everyone at school and home about if it was worth continuing.
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Now. My daughter was in no way cured of autism. At all. She is still and does still have a developmental delay, a diagnosis of autism. However, she stopped being so violent and angry. The irate meltdowns disappeared, and the regular meltdowns seemed to lessen. That is what we saw at home. Less screaming, no hitting and kicking.
School? Emma’s para summed it up by saying, “If it was my daughter, and I firsthand saw these results – I wouldn’t hesitate for a second to keep her on the diet.” So, despite the cost and added workload on the mother (me), we kept her on the diet.
I’ll be honest, in most ways it sucks. It’s more expensive, it takes way more time to come up with lunches and breakfasts to send to school that she will eat, and it’s just …more work. My son is not a fan of most of my GFCF treats, but hey, I guess that means he won’t eat them all, eh?
The strangest parts: Emma has lost a little weight (a good thing. She was not obese, but a bit overweight, which is a huge concern to doctor’s these days. I was tired of fielding the questions about her restricted eating patterns and what I’ve done to try to overcome them). She is eating a wider variety of food then before, definitely. Also, she is eating way less food. (She’d have these crazy hungry days where all she would want to do all day was eat – It was all I could do to keep the eating to some sort of minimum. Other days she could eat more than my teenaged son.)
Most strangely, she has totally and completely accepted her diet. My 5 year old daughter that hates change and only wants her way? She says, “Okay mommy, I can’t have that. It has (wheat/dairy).” We call it her Allergy Diet. She’s only broken down about not having a grilled cheese sandwich ONCE in the last 9+ weeks.
(Is this post long enough yet???? ha! I’m making up for lost time, folks. Hang in there.)
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Two days ago Bob and I decided that we needed to test this diet out a little bit, and see what some wheat would do. I let her have a hot dog with the bun. Then, I let her have two slices of bread, and then three pretzel crackers. She had been normal all day. About 45-60 minutes later she turned into the bride of satan. Bob kept looking for pea soup, and I literally sat in the front seat of the car plugging my ears and trying to smile to hide my ear-pain. She went ballistic; she screamed for hours, she repeatedly kicked us in the car while in her carseat, she banged her head back over and over again, and nothing was right. She sobbed and sobbed over nothing relevant. It went on and on… 4 hours later? A little bit better, but not much. The next day? A little iffy sometimes, but better than the previous evening. Today? Fine. Although she has asked for more bread about 10 times, which is more than the last 9 weeks. Hmpf.
No more wheat. Please, dear people, no more wheat.
Why did we do this? Because I feel it’s important to not blindly trust something, especially if it’s not easier and cheaper. I want proof. I also wanted to try to see if it’s both wheat and dairy, or just one that is more of a problem than the other. Obviously we figured a little something out this weekend. I am making her lunches and breakfasts with a renewed vigor. Also? I have a secret weapon I can use to get out of family functions… (Ha ha ha ha! Please know I’m joking!!!)
Stay tuned though, because next weekend we’re going to give dairy a try.
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PS: I did one of my big research papers in my abnormal child psychology class on the subject of the efficacy of the GFCF Diet in treating children with Autism. The reports are that it is inconclusive; there is no proof of it curing or changing a child’s autism in any way. So. I used that to back up my stance that I was not going to put Emma on the diet. The results are still inconclusive, and so I don’t mean to tell anyone what to do. I can however say that our experience has been somewhat drastic and specific. The end. For now. xoxoxo