Thank you all for your time in following A Vision of Autism. As life has changed, so has our situation, and really it’s time for a new place for self-expression and sharing about my experiences with Emma. Please join me at:
living-in-between.com
Sincerely,
Daleth
It was late, and I was tired of being woken up from those early, dead stages of sleep, but regardless – when the meltdown went full swing – I stayed. For 45 minutes she cried mad, hard tears of rage, and nothing was EVER going to be okay again. I had turned off her new favorite show (Fuller House) because I realized it was keeping her awake instead of helping her go to sleep. (Yes, Emma 100% needs to have a cartoon playing to go to sleep.) Anyway, the abrupt changing of the channel totally set her off. In her defense, I was at least half asleep, and I didn’t even tell her what I was doing. I just came in, got the remote, and changed the show.
In Emma’s meltdown-world, she was never, ever, ever going to see the show again. Despite my promise that she could watch it when she got home from school tomorrow – it was still NEVER GOING TO HAPPEN. Logic was not happening, and the passage of time wasn’t making sense. These are things that I understand now… pre-frontal cortex shut-down. So, I laid down and just kept telling her how much I loved her, and that I wasn’t going to leave until she was alright. Eventually she came back to our version of Earth and things were going to be okay. We started talking a little, snuggled up in the blankets, looking at each other’s faces. Her eyes red from crying, we had this conversation:
e: Mom, am I ever going to make this life?
m: What do you mean?
e: I mean, is this life going to work for me? Am I going to be able to have babies? Have a boyfriend? What if I can’t do them… what if I just cant, and I just fail, and I never get control of myself, and I just cant…. do… or be anything real. Mom, what is going to happen to me?
m: Well. Then I will just love you. And I will still take care of you, Emma.
e: Momma, you have the most beautiful hair in the world.
m: Thanks Emma, you have very pretty hair, too.
e: And you have the most beautiful eyes.
m: Thank you.
And my eyes fill up with tears, because she was SO real at this moment, so lucid. Grief. What a sad thing for a 10 year old girl to be thinking about; those thoughts, they have a backing of truth that I just wish wasn’t there. I mean, what IS she going to do? What will life look like when I’m old, or dead?
I stroke her hair and remind her, “Emma, you just have to keep trying, really really hard, and do your best to keep growing.” Sometimes I feel like this grief that ties into my parenting Emma comes from clinging to the dream or an expectation. So, I remind myself to stop holding to the dream or expectation. Then, something in my brain says, “But how come everyone else gets to hold on to those dreams?” And I don’t have an answer to that right now. Maybe tomorrow, when not tired and sitting in in this quiet place called midnight, my positivity will kick back in.
(Originally posted in a 27,000+ member Facebook group for Special Education Teachers and Support Staff)
Dear Fellow Teacher,
This group has had numerous posts and articles with hundreds of comments on the topic of Special Education Teachers being physically abused and assaulted by students with disabilities. There are so many people in this group, and so many varied answers. However, I find myself feeling frustrated and agitated with the lack of perspective and level of judgement by some professionals in this group in regards to this subject in particular. The subject, again, being violent/physically abusive children. However, please note that it does cross over into nearly ANY single negative aspect of educating a child with a disability – when that aspect is directly attributed to their disability.
First, I want to clearly recognize that there is such a thing as a child with a disability that is responding violently, and that the violence can be unrelated to any of their disabilities. I know that does exist. But for the intent of this letter, I am going to speak to the other (much larger in special education) percentage of children, the group of children that are physically violent and it is in direct relation/due to their disability.
From the comments and reactions on posts/articles, I’m not entirely sure if some of you really truly recognize that there are children out there with disabilities that affect them in such a way that they are completely unable to control their violent and physical outbursts. My daughter is one of these children. She is loving, caring, generous, and has a heart of gold. Yet her disability prevents her from being able to exhibit the self-control and whatever else it takes to not respond physically and aggressively when she is perturbed in nearly any way.
There are many children like my daughter. These kids cannot have the violence “disciplined out of them”, ABA does not “train it out of them”, fear of law, returned violence, or even threat of death cannot allow them to simply control themselves. Again, this is their disability. That doesn’t mean they won’t have good days and bad days, that at times something clicks and they are able to handle a situation beautifully. It happens. But that also doesn’t mean they can control themselves all the time and are choosing not to, or they simply “aren’t motivated enough”.
Excerpt of my daughter at home… sobbing hysterically, “I don’t know why I get so mad!!! Why do I get so mad! I don’t want to be angry, I hate myself!” Enter self harm. Suicidal ideations. Scars on arms from scissors. Yes, she also has depression and anxiety in addition to her other conditions – but these thoughts are in direct relation to her inability to respond typically, and the violent, mean, abusive, aggressive responses or outbursts she has. Teachers, I just want to give you a little view of home life. She knows right from wrong, she LOVES people. Her inability to control herself has led to a self-image that is very, very difficult to live with.
Just like a child that is perhaps cognitively impaired and unable to show control of their bladder, requiring diapers and stinky, unpleasant diaper changes throughout the day, these children have special needs that go above and beyond the care of a typical child. It’s so unfortunate that their dysfunction is painful and actually dangerous at times.
When you sign up to be a special education teacher, you are signing up to help teach all children with all disabilities, and this includes children that have conditions like my daughter. They are protected by law, which clearly states that they deserve a free and appropriate public education, just like everyone else. If you are unable to handle the physical nature of a child that has an emotional disability, I understand. It really takes a special kind of a person to be able to effectively handle and deal with that. But you need to recognize that the child has a disability – and that they deserve everything the sweet, quiet child with Cognitive Impairment has, or the funny, quirky, at times agitating child with autism or ADHD gets.
You can make the choice to work in a classroom, school, or a district where you are not going to be caring for the hardest of the hard kiddos – but again, when you run into those children that I’m speaking of, instead of belittling parents or the children themselves(!), consider the fact that you did indeed sign up for this, and that if there is an issue, it is with your level of training and education as a professional or how your school district is organizing its special education students. I’m not saying it’s a teacher issue — I’m saying it’s an educational issue or it’s a structural issue, not a student or family issue.
I’m sorry that my daughter has hurt other people, it sucks so bad. A para I care greatly about had to have surgery on her shoulder due to an incident with my daughter that consequently led to a legal battle with insurance and her losing her home. It’s so hard not to feel guilty. I take that back, it’s impossible not to feel guilty. I just reign it in. The para hugs me, and says, “I knew exactly where I was working and what I was doing. I chose this job. It’s not her or your fault.” Ugh. But again, welcome to the world of disability. It isn’t a pretty thing. It hurts emotionally, and physically. Perhaps financially. I suppose someday they might have special education degrees that say a person is certified to teach the blind only, or autism only, or cognitive impairment only. But right now, it’s to teach children with disabilities. Period.
I’m rather tired of defending my parenting, my doctors, my decisions, and my daughter from society in general. It’s been a nearly 11-year battle of explaining, “No, really, she’s not a horrible brat. She has an invisible disability, and it makes life harder for her than for us, trust me.” It’s hard to convince people on the outside that I’m not a horrible parent. I’m also tired of my 3 years in this group, finding myself defending the fact that IT SUCKS THEY ARE VIOLENT, but hey – we parents certainly don’t pick it, they didn’t pick it, but YOU — dear teacher — you decided you wanted to dedicate your time and energy to help children with disabilities. So, yes, you did pick IT. Unfortunately it is indeed a blank check.
I find it extremely unfortunate that our higher education system doesn’t fully prepare teachers to effectively handle these students. It’s such a disservice to you and to them. I find it awful that many school districts don’t have the organizational structure to really best serve these children, and in turn, help their special education teachers out, too. It’s not fair to the teachers or the children. But regardless, there is a need for champions for these children. They deserve love, affection, attention, proper ‘care and handling’, education, and the chance to grow and stretch into the most functional people they can be.
Thanks for reading,
Daleth
Mother and Special Education Teacher
So, I think that this period of reprieve has continued long enough that I can finally comfortably post about it. I mean, I’d love to have a few days of positive news – and immediately fill you all in – but the truth is that so many times things shift immediately downward and I’d wish I hadn’t said things were better.
But right now, this time —- it’s the first time in EVER that I genuinely feel that things are going tremendously well. I’m still dubious. You cannot have years of downward spiral, and not squint your eyes a little bit at this infant-6-weeks of happiness. But regardless about my hesitancy, it is here, and is staying.
Family and friends have asked me, “SO, what is it? What has suddenly made things better?” and I am sure that it’s a combination of several elements:
First, we had a medication shift that appears to actually be positive. I’ll go ahead and share, but I believe that the Topamax has been the game changer – along with the side-kick of Cymbalta. We hadn’t tried Cymbalta in the past because is in the red on her Genesight test. That doesn’t mean it’s bad for her or she shouldn’t take it, it’s more that the Genesight test confirmed that she likely metabolizes duloxetine very rapidly, meaning that she may require higher doses than average. So far, we’re doing just fine on regular doses.
Second, our school district (HUGE shout-out to Fountain-Fort Carson School District 8 in Colorado Springs and SPED District Administration E.Z. for their stunning understanding, support, and dedication to success for ALL students) approved a 1:1 teacher and a 1:1 bus aide for Emma. This means that there is always a staff member at school that is there with her, ready to immediately pick up on warning signs and diffuse a situation. They were pretty much already assisting 1:1 before this, which was understandably leaving her classroom short-staffed. But they would occasionally have to help with other student issues during class and transitions, leaving Emma wide-open for negative events during her most susceptible times. Her bus rides have also been measurably better with the 1:1 bus aide. She has someone there to help her navigate things that are just SO hard for her! She is smart and very verbal, but her lack of executive functioning skills leave her out in the cold. Literally. Sometimes if she’s very aggravated or emotionally exhausted, she will be freezing and just cry or throw a sudden fit about it instead of simply putting her coat on. The bus aide helps her navigate that environment, and it’s awesome.
Third, I resigned from my teaching position as a special education teacher. I obtained a job working remotely (from home) as an executive assistant through BELAY Solutions. They are great! I’m considered an independent contractor, so technically, I’m self-employed. Oh well! This has benefited Emma immensely. First, my entire morning from waking her up to getting her on the bus is 100% dedicated only to her, and keeping things happy, ritualized, and as least-annoying as possible (that is least-annoying for HER, NOT for me!) No more me getting ready for work, getting work stuff completed, trying to rush and fit it all in so early in the morning. It’s all about Emma. And more importantly? If Emma is up through the night or has a really bad night’s sleep? I don’t even wake her up for the bus. I do this amazing thing called LETTING HER GET SOME SLEEP – so that she can try to function a bit more through the day! It’s totally cool. NO MORE GUILT. I’d feel so bad, because if I let her sleep in and drove her to school, I was late for work and letting everyone else down there – including my students. If I woke her up and managed to get on the bus, I’d feel guilty for subjecting her school’s staff to her unavoidable horrible day, and I’d feel bad for Emma – because she doesn’t want to “be bad”. It sucked. Now, it’s no more! The only guilt I feel is that the bus aide might feel like she was unnecessary, but I just can’t feel too bad because… well, because. I need a break from guilt.
Fourth, Emma has found a measure of positive self-esteem from our charity we have started, Emma’s Cards. She desperately needs something to feel good about herself with. She is painfully aware that when she is out of control of herself, that she is “bad” and hurts other people. She has such a beautiful, generous, caring heart, and her self image is destroyed on a daily basis by her actions and her physical self-image. Emma’s cards has been filling her need for philanthropy and do-gooding. Which I can really relate to! So, we’ve started the big push to get Emma’s Cards off the ground. You can connect to it on FaceBook here, too. Don’t be offended if I dedicate an entire post to Emma’s Cards in another month or so.
Now, to kind of let you know what life has been like here. She has stopped aggressing at me 100%. She tells me all day long how much she loves me, that I’m the best mom in the entire world, and she tries REALLY hard to control her emotions. When she gets upset, as long as I handle it perfectly (and I do mean PERFECTLY) she will calm down and come out of it within minutes, 80% of the time. Within a minute or two, she is tearfully apologizing to me, “Mom! I’m SOOO SORRY! Please forgive me!” which is a huge change. She has been getting on the bus well, and dealing with disappointment about 50% better than before. She has been sweet, loving, and caring. She has been handling my husband’s commanding and harsh tone of voice very well, almost without reaction most of the time. I’m even able to get her to brush her teeth, bus her own plate from the table, and occasionally actually refill her own water!
She is still scared at bedtime, but we have a routine of our special Emma-Mom time before bed, and I just try to stick to it. I would say her sleep is approximately 50% better than before, too. Picking is horrible, but self-injury has halted. I haven’t heard her complain or cry about Roblox being gone for weeks.
Now. Life is NOT peaches and cream, I assure you. And things are still very touchy. I receive an incident report for a restraint or a seclusion on a daily basis (not exaggerating!) The difference though is that they are able to get her de-escalated within minutes, the elopements have ceased, and repeat high-intensity incidents aren’t happening all throughout a day. In essence, she’s really starting to be able to self-calm and get a better grip after an incident occurs.
On a personal note and to kind of bring a level of awareness to the mother-situation, you could also say that in the last 2 months: I’ve resigned from my career to bring in about 25% of my prior income, have SSDI starting a recollection of a $13,000 overpayment, had to put my 14-year old most amazing dog companion Arrow to sleep, and I went through a hysterectomy-plus repair surgery. It’s been a freakishly stressful year and an insane 2 months.
Thankfully I have a dedicated, loving collection of family and friends that always find ways to brighten my day, along with a daughter that (usually) fills my heart with love and joy. She can be so precious!
*Quick note: if you’d like, you can also connect to this blog through Vision of Autism on Facebook.
I’ve been wanting to post an update about Emma in here for a while now. However, along with all the other roadblocks to regular blogging, a month or so ago an interesting article halted me in my tracks. Did my attitude(s) about my daughter’s disability have the potential to hurt her? Harm her future? Affect her outcome within the general public?
I’ve questioned the public display of her/my/our lives before. However, in the end, I always felt that the pros outweighed the cons. The post by Ellen Stumbo, however, made me stop and think. I immediately went online and disabled my blog from public to private. I needed time to think and process, I needed to re-evaluate and make sure that A Vision of Autism (AVA) was indeed respecting Emma and her rights as an individual.
As I went about my own chaos, this subject churned about in the back of my mind. Days went by, and I thought about the people I had sent links to view this blog, and I thought about those that had already viewed it. Instead of feeling helpful, should I feel embarrassed? I wasn’t sure how to answer the question, and so AVA remained private.
The other day Emma and I were driving to The Children’s Hospital for a follow up at a specialty clinic. She started a game of “Truth or Dare” in the car with me, which I found funny and mildly terrifying. I had no idea what was in her head as far as truths or dares would be, and if she asked something I couldn’t perform, what kind of situation would unfold? However, things remained pretty clean and easy. She did dare me to be a REALLY REALLY bad driver, and so I did. I sped up past the semi-truck and passed it, and I did exceed the speed limit. 🙂 She truth-ed me about things like the grossest thing I’d ever seen, and I dared her to count to 100, and it was all good.
That’s when I realized I had the answer to my question. Why not just get to the TRUTH of the matter? I told Emma that I really needed her to listen like a young adult, and not a little girl, and I told her about my blog. I was as objective as possible, and I was honest. I let her know that I talked about our problems, issues she is having, and how things really are at home. I told her that I had this blog for three reasons. First, because I like having a record of our life – a sort of digital memory book of our journey. Second, I find it to be very helpful for my emotions and moving through them. (This is a concept she relates well too, as much of her life she has found writing about an angry/fearful event to help her to regain a level of calm or acceptance.) Third, I told her that I believe it helps other parents and families to understand that they are not alone, and that they can sometimes feel some sense of connection and help from my blog. I explained that some people are concerned that the person with the disability (the one being written about) might later feel unhappy, disrespected, embarrassed, and not want that writing to have been put online. I asked her, “What do you think about my blog, and how does it make you feel?”
Her first and instant response was, “I feel really happy! I think it’s so great that you can help other parents by talking about me!”
JACKPOT. I suddenly knew that this is what others needed to know. I told her, “Wait!!! I need to record this!” and I got out my phone. I clicked my instant photo button, so I could remain safe on the road, intro-ed, and handed the phone to Emma. You can watch the video and hear her answer yourself.
Summary: She thinks it’s great, and wants for other parents to not feel alone. She was also insightful, and in her own words expressed that some kids might not like the blog. But other kids, like her, won’t mind at all. I let her know that I would re-evaluate if she was still okay with my blog when she was an older teenager, and she agreed that would be a good and helpful thing to do.
In essence, I don’t think that Ellen is necessarily correct. I believe that every person is different, and will have different thoughts and feelings about their situation and how it is portrayed publicly. Like nearly EVERYTHING about autism – a “Once Size Fits All” approach just doesn’t work. So, ce la vie! AVA is staying active for the next 4 or 5 years at least. Then she and I will sit down and talk about this again.
Thank you for reading, feel free to comment! Updates on current lifestyle’s of the not-so-rich and famous will be coming within the week. XOXO
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.
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.
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.
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
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.
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.
vision of autism 