Motoring

Four and a half years ago when I started this blog, after watching my first episode of Hoaders, I remember looking for other hoarding blogs. I know I've written about it once or twice and how disappointing it was that they didn't keep up with their blogging. It made me think that perhaps they weren't successful with dehoarding their homes and getting their lives back together. Had they stopped blogging, because they had fallen off the wagon, so to speak, and were just embarrassed to come back and admit it? It saddened and concerned me. It made me wonder, if I'd ever be able to get it all done myself. 

It didn't dawn on me that perhaps blogging got to be too much for those who had started their journeys and that life won out. At least it didn't dawn on me until it happened to me.

The last several months have been full of, well, life. That, and my computer died on me. So I'm actually borrowing Bugster's computer for the day, so I could peruse the internet for awhile and drop by for a quick blog post.

Since Hubster had his gallbladder out back in March, our lives have been filled with all sorts of everything. 

Scooter's had some health issues that caused liver and spleen enlargement, (We never did find out the cause, but she's doing much better now.), she graduated from high school, and she's now going to her day program 5 days a week, and is thrilled she didn't have to start school last week with the rest of the students in the district! 

Hopper has done very well. A year ago, we took her in for a surgery consultation. The doctor was willing to do the surgery, but she wanted Hopper to lose some weight, so the insurance company would be more willing to approve the surgery. She's lost 29 pounds, (12 of which she'd gained in the previous year due to some medication she was taking), and the surgery is a go. We just barely got approval for it a few weeks ago, but we are beyond thrilled that she will be able to have this surgery! It will be life-changing for her. The downside of this is that her anxiety is quite high while she awaits the surgery scheduled for the end of October. 

I definitely added to her stress level. The last 2 weeks of July, I was in class for 8 hours a day to become a CNA. Hopper doesn't do well at all with change, so for me to not be home during the day was very difficult for her, in spite of the fact that I was always here with the girls in the evenings. The days were long, though. The girls' hours were extended at the day program for those 2 weeks, and it just took its toll. It was wonderful getting out of the house, being back in the school setting, and meeting people, but it was also exhausting. Still, I would do it all again in a heartbeat! 

Unfortunately, it's brought out the worst in my fibromyalgia. I've been in the worst flare I've had since I was diagnosed with it 6 years ago. It doesn't help that I ran out of some of the things that help when it gets out of control. Thankfully, they should be here tomorrow, so I will, hopefully, be fully functioning again soon. And thankfully, we haven't had any major wildfires this year, so my asthma is under much better control than it was a year ago. I'm still on a small amount of daily oral steroids, but I should be done with them shortly, so things are looking up.

I'm looking forward to taking my state test, so I can get my license and be hired on to be the girls official caretaker. It will be really odd to have an income for the first time in our 28 year marriage. It's not that I wasn't allowed to work outside the home. Hubster's not like that. I'm not, either. If he had said that he didn't allow me to work outside the home, my first stop would have been to flood the market with job applications. But I can't think of a single job where I'd have been able to call in and say, "Yeah. I need the next 3 weeks off... Hopper and Scooter have another cold." So this will be a life-changing thing for our family, and I'm looking forward to the freedom it will allow us.

Now to answer my original question. Have I left my blog, because I'd fallen off the dehoarding wagon and was too embarrassed to admit it, or has life just been overly full?

I'd like to think it's mostly that life just got in the way. While the dehoarding has taken a backseat to life, it's still in the car, and we're still putting along.

Happy! Happy! Happy!

Buster thinks she's coming down with an ear infection, so she stopped by this morning and asked me to look in her ear with our otoscope. There's definitely something going on in there, so she'll be going to the doctor to have them check it out. She hung around for awhile afterwards, so we could catch up on the latest with work and the rest. 

I always love when she stops by and we get to see her unexpectedly. It just brings sunshine to my day. And while we were visiting, the day just got brighter and brighter...

Hopper and Scooter has stayed the night at Bugster & Bubster's house a couple weekends ago when we went on a date. They'd taken their clothes and strings and such over in duffel bags, because they were quicker than getting out the little overnight case that's stored under the stairs and takes a bit to get to.

I'd unpacked Scooter's duffel bag earlier and had put it away, but I hadn't gotten around to Hopper's. We've been busy since our overnight date installing exterior doors and other such adventures, so I'm behind on things around the house again. So I just hadn't gotten around to unpacking it. That's all.

And sometimes this morning, Hopper decided to use it to carry her strings and boots around. The girls are funny that way. They love to pack and unpack bags, purses or even grocery sacks. So the duffel bag was just an extension of that. Nothing out of the ordinary.

And while I had done a quick inspection of her duffel bag when I was looking for Scooter's shirt, I hadn't torn it apart. What I'd seen when I looked in was the same thing that I'd seen when she brought it home from her weekend at Bugster's. But while Bugster and I were talking, Hopper pulled something out of her bag...               

It was red.

I saw a flash of black and white, and I just held my breath while Hopper worked at turning it right side out. 

It was the butterfly shirt!!!! 

Scooter was sitting there and was just beaming! She was definitely excited that it was still here! She decided to put it on, so Bugster could see it, and so she could go show her daddy, and all this was with a smile as wide as the Grand Canyon on her face! Heck! We all had smiles that wide! We are so very happy! So very, very relieved!  

We're so relieved that she didn't throw it away, even though she pointed to the picture of the garbage can. Then again, I hadn't drawn a picture of a duffel bag, and she may have pointed to that picture, because she'd put it 'in' something. It's a frustrating thing that we all deal with with her inability to communicate. I'm just so very thankful it worked out in her favor! 

I feel like I've got Snoopy in my head doing the Happy Dance right now! 

Yay!!!   

When clothing is more than cloth and thread.

A few years ago, Scooter wore a shirt to school that Bugster had given her. She loved that shirt. After all, her sister had given it to her. It was a black thermal underwear shirt that had little skulls all over it. I personally can't stand skulls on shirts, but these were so little that it was easy to forget that they were on there, and because of her affinity towards it I let her wear it. It did say, "La De Freakin' Da" on it, but she didn't know what it said. She just thought it was fun.

She wore it to school at least a couple dozen times with no problem. Then one day when she wore it, someone said it was inappropriate to wear to school, and she was told to turn it inside out and wear it like that for the rest of the day. She had no idea what she had done wrong. (Neither did we, for that matter, since they'd never had a problem with it the first 2 dozen times she'd worn it!) She just knew she felt horrible and was totally humiliated by having to wear it inside out. After all, that meant that any student or faculty who saw her knew that she was a bad girl for wearing it. 

We still don't know why the teacher didn't: a) call us and let us know there was a problem, b) put a tshirt on over it that we'd sent in for spare clothing for her in case of an accident, or c) take it off and have her wear a spare shirt for the rest of the day. But she had the same teacher that sprayed her with industrial strength air and surface sanitizer. So poor Scooter didn't have much of a chance in the entire situation. When she got home, she was heartbroken.

She got off the bus absolutely glaring at me and hitting herself in the head alternating with trying to pull her sleeve off. She was exceptionally upset. When we got inside, and I read her communication notebook, I guess I could understand where they thought it was inappropriate, but I still didn't understand why they felt the need to humiliate her. Then again, we didn't know that she was being sprayed yet, either.

She immediately tore her tshirt off and wanted to throw it in the garbage. She wanted nothing more to do with it. I told her I'd wash it up and get rid of it, but we didn't need to throw it away. It was gone within the week, and she never had a problem with it again. 

Until last week, that is.

Scooter's classroom had a community outing, and the forecast was for it to be 85 degrees. It didn't get that warm. Only got to the mid-60s. She'd worn her very favorite long-sleeved tshirt that her my mom and sister had gotten her. She absolutely adores butterflies, and this tshirt had huge ones on it. It couldn't have been more perfect. Long sleeved and butterflies!  She wore a denim jacket, because it was chilly when she went to school, and we felt that was perfect with the weather the way it is. I mean, she can wear long sleeves in the summer and never break a sweat. I've never been able to do it, but she sure can!

When she got home, though, she wasn't wearing the shirt. She was wearing a spare short sleeved shirt that we'd sent in for use in the case of a spill. She was so upset. Before she even got off the bus, she signed to me that it 'stinks' and 'broken'. The broken had to do with her necklace that had come apart, but the 'stinks' was because she didn't have her shirt on. I just figured she'd gotten it dirty. 

Wrong.

The teacher felt like she would be too warm in her long sleeves and denim jacket, so she took her tshirt off her and had her wear a short sleeved one for their community outing under her denim shirt. I didn't receive a phone call. Just a note after the fact. While I was reading the note, I saw in my peripheral vision that Scooter had taken the shirt and had headed into the kitchen with it. I assumed she tossed it downstairs, so it could be washed, but I didn't check that she had.

The next day was trash day, and Hubster took care of it. I didn't really think much of it until it was time to get the red clothes washed yesterday. I looked all over for the tshirt. 

It was nowhere to be found.

My heart just sank. When she got home from school, I drew her a picture of the shirt and reminded her of the situation, and then I drew a picture of the garbage can and a picture of the stairs with dirty clothes at the bottom. I asked her, if she'd thrown the shirt away in the trash can, or if she'd tossed it downstairs to be washed.

She pointed to the trash can. 

I asked her, if she'd thrown it away, and she signed, 'yes'. Then she signed, 'sorry'. I just about cried.

Even though she apparently had no negative reaction at school to changing into a different tshirt, she obviously thought about it for the rest of the day. And I know that in her little mind it was no different than when she had to wear the tshirt inside out, because she'd been 'bad'. 

My heart breaks for her. That was probably her favorite tshirt. She would get it out of the dirty clothes and wear it, if she didn't feel like I'd gotten my act together quick enough with the laundry. She'd wear it dirty for weeks at a time, if I didn't insist that it needed to be washed. And it just makes me so sad that even if she was confused about what I was asking her, and it shows up somewhere around her that it will never be as special to her as it once was. 

It's not like she gets to ever have a boyfriend or even a real friend. She'll never be able to get a job or go to college or have a family of her own. She doesn't play with toys much at all. In fact, her scarves, jewelry, boots, and clothes are really all that matters to her. I mean, she's got a toy here and there that she loves, but they are the  rare exception. I think one reason that they mean so much to her is that they are a way for her to express herself. And being nonverbal, expressing oneself is really, really important!

I know that the teacher was doing what she thought she could to help Scooter be more comfortable during their outing, but I really wish she'd have called me first to check with me before she took it upon herself to have Scooter change clothes. I made it very clear that I am not angry with the teacher but that I expect her to talk to me before she does something like that again. 

And then I cried my eyes out at Scooter's loss. 
    

    

I don't even know where to begin.

This past year has had more than it's share of rough spots, and I've written about many of them here, but there was I never quite knew how to approach. I started writing the following post last August. I decided to finish it up today. I'm hoping that by posting it, I let go of the emotions involved a little better, since they still creep in from time to time.

From August 11, 2011, (a full month before Scooter's head to toe rash from the antibiotic overload):

Obviously, I've had a lot on my mind this summer with our nephew's wedding we went to the end of May/beginning of June to Hopper's broken leg, emergency surgery, hospitalization, and heart stoppage the end of June/beginning of July to her convalescence at home since then, to Bugster and Bubster's wedding mid-July, and the in-laws' visit and the stress that ensued. Not to mention the mounds of paperwork I need to go through to find birth certificates and social security cards, so we can get guardianship of the girls, (which is another post entirely!). 

So I've pushed a few things to the back of my mind to recall at a later date when I can deal with them with my whole mind in the race.

A couple of things I'd totally forgotten about were the girls' IEP staffings. School staff set the dates and times back in May when we were on vacation, and I'm sure we got some sort of a notice mailed to us, but I have no clue where they might be. Any mention of said meetings was promptly forgotten with the stress that has been our summer.

So I was a bit taken aback when I recently received a reminder call for Hopper's staffing I'd totally forgotten about it. That simple reminder call triggered something I'd shelved in my mind all summer. Something concerning Scooter and how she'd been mistreated at school by both her teacher and a classroom aide. The situation has not been far from my mind since it resurfaced with the call...

We pulled the girls out of school a couple of days early last May, so we could make it to the wedding. With it being the end of the school year, there were several phone calls with different people working with the girls in those last couple of days they were in attendance. There was just a lot going on, but one phone call in particular stood out from the rest.

An employee of the school confided in me that they witnessed Scooter being mistreated. They insisted that what they were telling me was strictly confidential, but that there were other witnesses to the behavior, and they would deny having told me anything, if they were asked. The person didn't want to lose their job, and I can completely understand that. I didn't want them to lose their job, either. So their name, their sex, and their position as an employee will not be mentioned either on the blog or in the meeting we have tomorrow to deal with this situation.

But let me back up a minute....

  

I've mentioned before that Scooter couldn't sit up until she was 4, and that she only weighed 21 pounds at the time. She was a tiny, very sickly little girl. She was hospitalized repeatedly with asthma and pneumonia that was a direct result of constant vomiting. A few months before her 4th birthday, we found out she was missing her esophageal sphincter, which meant there was no way to hold down anything she took in. Everything came back up.

As a result of the discovery, Scooter was scheduled for surgery. The surgeon had to detach her stomach from the surrounding tissue it was attached to, wrap it around her esophagus, and staple it in place to make a substitute sphincter, so she could eat and actually keep things down. The surgery reduced the opening of her esophagus from the diameter of a quarter to the diameter of a pencil. The most beneficial result of the surgery, is that she is not able to throw up more than a teaspoon or tablespoonful of anything, and she finally started to thrive. 

The major drawback to the surgery is that she can't burp. And everyone has gas. And gas has to come out one way or the other. In Scooter's case it always comes out 'the other'. We give her simethicone tablets every morning and evening to help make the gas less painful and make it easier to pass. If we don't, when she lets loose, let's just say she really lets loose. 

It's something that can't be helped. She has no more control over it, than you or I have over the color of our skin. We've tried the enzymes for gas that you take before you eat, so you'll have no gas, but they don't help. Simethicone is the only thing that helps, and even then there are days it can't keep up with the amount of gas her little body produces. 

And there is really nothing we can do about the smell of said emissions. And yes. It can be gross and take your breath away. Literally. But it also can't be helped. We can always tell she's had a particularly malodorous day, when I get a note home about how horribly gassy she was and isn't there anything we can do about it? Did we perhaps forget her simethicone tablets that morning?

It gets old, no doubt about it.

But you would think that people who work in a classroom with children of different developmental ages would understand that bodily functions are not something that can be helped. 

I found out otherwise with the phone call back in May.

The school district employee, (I'll call them, Pat), told me that they had witnessed both the teacher and one of the aides making a huge production over Scooter's gas issues. Not only would they fan themselves in an exaggerated fashion, but they would exclaim loudly (so the entire class could hear) how horrible Scooter smelled.

Unfortunately, the aide didn't stop there. She would apparently get the industrial aerosol disinfectant/cleaner or air freshener (it depended on what they had on hand at the moment) and spray toward the floor all around Scooter's chair. And although she had the spray aimed at the ground, there was a large hole in the back of Scooter's chair, so it would fall on her back and on her legs. Once she was done doing that, she would spray a huge cloud above Scooter's head. The droplets of aerosol spray would drift down and cover Scooter from above, landing on her back and chest. 

There have been several times over the last 2 years that Scooter has come home from school with a rash that covered both her back and her chest, and I never even thought it might have stemmed from abusive actions by those we were entrusting her with in school. I just assumed it was hormonal or a heat rash. I never once imagined what had caused it! She would scratch it in her sleep and wake up with little spots of blood on her night shirt where she scratched it so hard she bled. I would have to give her antihistamines to calm it enough she could sleep at night. 

We saw what it did to her skin. I shudder at the thought of what it did to her lungs. She's had severe asthma since she was tiny. She's been hospitalized roughly 3 dozen times at this point, with most all of them involving asthma or pneumonia for part of the stay.

Scooter had this teacher for 1.5 of the last 2 years, but she's had the aide for the 2 full years she's been at this school. So for the last 2 years, these sick witches have bullied, ridiculed and abused our little girl over something that she can't physically help, over something nobody has any control.

I can't tell you how relieved we are to know that the teacher left in the middle of the school year last year and won't be back. She's not fit to be a teacher, if she allows this sort of stuff to happen in her classroom, (let alone participate in it!), and doesn't stand up for the most innocent and defenseless among us! 

......

That's as far as I got in my post. I had to step away from it, because anytime it came to mind, I'd end up having to take meds for my anxiety, so here's the update:

We took the matter before the superintendent of special education as well as the principal of the school. The school employee who told us about all that had transpired refused to come forward. They were afraid of some sort of reprisal from the school district, in spite of the fact they no longer worked for them. Unfortunately, we didn't get very far with the school district as a result.

The employee said that several other employees had witnessed this behavior over those 2 years. Unfortunately, none of them stepped forward against the aide that was still working there when the situation was investigated by the school district. However, someone did come forward with information that Scooter had been sprayed by Febreeze by the teacher on at least one occasion! Dumb b*tches.

It is so infuriating to picture. They are nothing but big bullies picking on a defenseless child. Scooter can't speak, so she couldn't tell us about it. Even if she was using her speaking device to try to let us know, she would not have been able to find the words to use. There's no pre-programmed button mixed in with the buttons she pushes to let someone know she wants a salad or a slice of pizza for lunch that says, "My teacher is picking on me!" or "I had gas at school today, and my teacher and the aide ridiculed me for having gas." or "I HATE when my teacher sprays me with Febreeze! I can't BREATHE when she does it!" "HELP ME!"

I think of how utterly alone and defenseless she must have felt. It's no wonder she would tell us she was tired and did't want to go to school or would pull the covers up and roll over to pretend she was still asleep when we came in to get her ready for school. 

And it's not like she could just get up quickly and get away from the spray. She moves like a turtle in molasses most days. With her spine having been fused, she is severely limited in her mobility. She can walk, but even with the lift  on her shoe, she has a limp. She was a captive but unwilling participant. 

While we don't believe the aide had any disciplinary action taken against her as a result of the investigation, (they told us they could not substantiate our claims), we insisted she not be allowed to ever work with Scooter again. She is now working in the other special needs classroom. And while it is not ideal that she is still working with children who have no defense against this sort of abuse, she has at least been put on notice. I have no doubt that every single person who works with her now is keeping her on her toes.

For now things are going well, but I still think the system is broken. I'll go into that more in a different post, but suffice it to say that Hubster and I would like to see things change.

I just don't know, if I'm the right dog for the fight.

Just when things were getting better...

...it begins again.

Scooter missed the first 3 days of school due to illness and fever and the 4th day of school for the guardianship. After attending school for 4 days, she's home sick again. This time, she's shared it with the rest of us.

I'm glad it didn't come at a more inopportune time - like when we were scheduled for court last week, but timing really isn't good. I was just starting to feel more normal and like I was returning to a good place mentally. 

I'm just hoping that by the time I start feeling better physically I'll be at the top of my game mentally, so I can get something accomplished! 

Maybe tomorrow? After all, it *is* another day.

Travel plans.

Things went well for Scooter with her first day back to school in several weeks. She fell asleep on the couch shortly after she ate, and she didn't give a second thought to going to bed - just got in her jammies and snuggled into her flannel sheets. 

I didn't handle the early wake up time nearly as well. I overdid things in the workout room a bit when we were sorting boxes of books yesterday. It kept me from being as productive as I'd have liked to have been, but I was able to get 4 loads of laundry done and some of the bedding changed. It's better than nothing, but I'm hoping to get a bit more done tomorrow. 

It's going to take awhile to get back on a schedule of zero dark thirty wake up calls. I think it's going to take me crawling into bed in the next 15 minutes and snuggling up under the blankets. 

I think Scooter had the right idea...

I'm off to LaLa Land.

How do I know, if I'm a hoarder? Pt 3 - Perfectionism

I'm a perfectionist. You may not know it by looking at my home, but I am. In fact, I've been working on this post for 4 days now trying to get my thoughts into words. Trying to make it perfect.

Once again, I think I'm trying too hard.

Growing up, we were taught to do the best we could at anything we attempted. To give it our all. If you do your best, you can take pride in your work. You can be proud knowing you gave it your all, and your effort will be rewarded. 


You know the old adage... If you can't do something right, don't do it at all. 

When I was a kid, I thought that meant I had to be perfect. And when I wasn't perfect, when I didn't get something right, it meant that I was wrong. And I equated 'wrong' with 'naughty'. With failure.


My parents wanted me to apply myself, and rightfully so. Kids should apply themselves. Thankfully, my parents were not stage parents who pushed and pushed wanting me to be perfect. I was the one who wanted to be perfect, and I made things so much harder on myself as a result.


Even though I got good grades in school, I would be so disappointed when the grade on my paper was less than an A-. When I would get a B+, I always chided myself for, if I had only applied myself a smidgen more, I could have gotten an A. Disappointment doesn't describe what I felt, if I got a C on a paper. I was traumatized. Report cards were even harder to handle, because I could never quite get straight A's. I'd get all A's and 1 B one quarter and the next I'd have brought the B up to an A while in a different class my grade slipped to a B. It was maddening and disheartening.


School wasn't the only area where I had perfectionism issues. I didn't like art, because I couldn't seem to draw or paint anything that resembled what it was supposed to. As much as I loved to sing, I couldn't carry a tune in a bucket with the lid duct taped on tight, if my life depended on it. So I didn't sing where anyone could hear me.


Shortly before Bugster was born, we bought my sewing machine. I loved it, but I was so afraid of making a mistake and having my project not look good that it took me months to sew the only baby outfit I ever made. I made plenty of baby blankets and curtains and the diaper bag and bumper pads, but they were fairly easy things to sew. They were straight lines for the most part. Plus they stayed in the nursery. If I messed up on a baby outfit, people would see it when she wore the clothes. People would be able to see my mistakes, so I just never made clothes.


The list goes on and on. 


It carried over into my life as a mother. I needed to be a perfect mother. It felt so personal when one of the babies cried. I just knew that it was, because they didn't love me, because I wasn't a good mother. I would be so embarrassed, if one of them spit up on their new clothes. I mean, if I was a good mom, they wouldn't get their clothes dirty, because I would have kept them from getting sick.


By the time life became so overwhelming with hospitalizations and the different medical needs the girls had, I was exhausted. Not only couldn't I get ahead on the laundry and housekeeping, I couldn't keep up on the daily stuff. It didn't matter that what I was going through as a mom was not typical, and that the only way for anyone to really keep up with what I had going on was to have extra help. I felt very, very imperfect.


In the meantime, I still had to make sure the clothes were all folded and put away without wrinkles. (Wrinkled clothes have always made me feel like a failure). The towels and sheets had to be folded exactly the same way each and every time. The dishwasher needed to be loaded, but it didn't get the dishes clean, so I had to pre-wash all the dishes before they went in the machine. 


When I started getting so overwhelmed I couldn't keep up I stopped trying. I started living the, 'If you can't do something right, don't do it at all' to the fullest, because I didn't know how to do it any other way. As a result, all sorts of stuff piled up. Papers didn't get filed. Clothes didn't get sorted out of the main laundry when the girls outgrew them. Forget about getting the clothes sorted. I couldn't even keep up with keeping them clean. Dishes didn't get done in a timely manner, if I didn't have time to wash them all before the dishwasher was run.


I couldn't do it. I was a bundle of nerves, and depressed enough that I struggled with daily life.


And once again, I was a failure.