Smooth Sailing, At Last (For Emma Anyway)

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.

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Emma’s Dog, Freyja, very patient and loving with Emma 🙂

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Emma with her first order of cards for Emma’s Cards
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Me and My Arrow

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Being Here Now

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

In the past 3 months we’ve seen:

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

Settings for all of us have changed:

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

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

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

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

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

Anyway, I’ll talk about this week.

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

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

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

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

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

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

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

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

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

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

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

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