Those Unseen Things

Sometimes there are good days. Sometimes there are days that can go up and down. Sometimes there are bad days.

It’s hard when she has self-regulating issues. I provide a means to get her back on track, but if she doesn’t or refuse, we have to step away from a situation. Being in the car has been a dreadful experience. She doesn’t stay buckled. Thank goodness for childproof locks! She throws whatever is within reach. She will undress and throw items while I am driving. Having something to keep her occupied like a leap pad can go either way. Either she’s completely engrossed and has a break down when the battery dies, or she flips out and throws the leappad.

Worst of all is grocery shopping. I make multiple attempts to bring her to the bathroom and keep it consistent. That is the one thing that she will often fake me out for. She’ll use the excuse that she needs to go. We leave our carriage, go into the restroom. She asks me for more time. She doesn’t go or only goes a tiny bit. We clean up, dress, wash hands, etc. Quite often I find my cart of food is gone as someone assumes I left it and decided to put all of the groceries back which causes further frustration. We go to the bathroom first when we arrive before we do our shopping and sometimes in the middle and at the end if we are with other people so we can take turns watching the carts. It’s quite different when we’re alone and the bathroom breaks are only the beginning.

When I am by myself I take her straight to the car if she acts out when shopping. She calms down. We go back in and start shopping again as our cart has been put back. She freaks out. I leave the cart and groceries and take her back to the car. Rinse and repeat until I am asked by store personnel to please stop leaving groceries in my cart and taking off unless I actually intend to buy something. They would request that I leave the store and maybe come back when I can better handle my child or better yet, when she is not with me. How do you explain “I’m training my daughter who has autism and you’re not helping”? And even when I have said it, I get the looks of disbelief. She doesn’t look autistic, because clearly autism can be easily distinguished by the way a person looks.

They don’t understand the meltdowns. They don’t understand why or when I melt down and I yell, because it’s been happening for days or I am beyond frustrated myself for not being able to continue to remain calm and collected 24/7. They don’t see that I take the time to apologize to my daughter for my own behavior if I lose my cool, because I want her to know that I’m not perfect and I am responsible for my actions. I still struggle just like her. I talk to her and tell her why I was wrong and why it’s important that we talk. Even if we need time to cool down, it’s good for us to come together and find mutual ground. I know it’s not easy for her and I don’t expect or want to force her to be normal.

People don’t see how long I go being incredibly patient and calm where most others would have flew off the handle with their own children who are considered normal developers. They also don’t see that I feel like crap about it. That I feel like somehow I am supposed to do everything a million times better because she is autistic. That I am supposed to have the patience of a saint. I don’t want that kind of pedestal.

I just want to see my daughter smile. I want her to know that I love her and I support her. I want to go down the slide with her because she wants me to join in the fun. I want her to understand the importance of things like shopping, driving, cleaning up after yourself, and taking responsibility for your own actions… Because I hope she has the ability to live her life and be self-sufficient, or at the very least, be able to contend with the likes of society. If she can’t, that’s fine too. But I want to do all that I can as her mother, to give her every opportunity to practice, and try to become comfortable with these things.

It was never the diagnosis that freaked me out or scared me. It was wondering about the world’s acceptance of who she is as a person, and who she will grow to be, and needing to know that I did all that I could to help her survive the brash uncertainty that lies outside the walls of our home. That is what causes me to lose my cool. That is why I shed my tears. I just don’t know at this point.

I personally struggled with the acceptance of my peers, and I still struggle with accepting myself. I’m trying to work on that. It’s never too late. It just takes time and it’s never easy, but I want to be an example in her life and show her that there are always struggles and imperfections. I want her to know that while I don’t always feel like I’m a perfect mom, I can at least tell with all of my being that I know I have the perfect daughter.

 

ABA versus IEP

My daughter had an amendment adding an extended school year to her IEP. She really needs consistency and has a difficult time getting back into class after weekends and vacations. It makes it difficult for the school to meet success with her IEP goal even after scaling back the goals to better suit my daughter.
It’s hard to find a rhythm that suits her needs because they do change frequently. At home, we can more easily adapt. Academically, she learns things quick. If boredom sets in, she’s done. It’s her self regulation, primarily frustration, and her social skills that end up lacking. 

At home she loses out on much of the social skills with her peers. She doesn’t have siblings, but a cousin who is about a year older inconsistently connects. She prefers adult attention, which isn’t much different from my own upbringing as an only child. 

Things have been consistent as can be at home especially with ABA. We have charted so much progress with everything that we work on in the home setting. One of the biggest things has been the desire to show affection and the need to receive it. She used to push us away, say no, run off, etc. I grew up with a mother who was very attached and cuddly, so it was strange to not have that response in my own child. I think giving her some space allowed her time to understand the social aspects better.

At school we heard a lot about bad days, especially on the bus. She often gets sent to another room when she freaks out and they can’t calm her down. She has a lovie that was helping at school, but she was throwing it on the bus. Granted, the rule for the bus is to keep her items up front. So I want to say that is on them, but it also doesn’t give her the opportunity to learn to keep track of her own items in a suitable manner.

We may lose ABA if she gets assigned afternoon hours for the extended school year. They need to hire and train someone new and because the school hours would change come fall again, they would probably wait and start up with the fall schedule.

As a family we had to investigate the situation as this is new to all of us. We have to ask her teacher to request morning hours. We won’t know what hours she will get until about a week before the extended school year starts. We decided that if we get morning hours, we will keep both ESY and ABA. If we get afternoon hours, we will drop the extended school year and keep ABA.

ABA is consistent 5 days a week. Regular school is 150 minutes 4 days a week. ESY will go four weeks only for 150 minutes 3 days a week, then back to the 4 day schedule for regular school with afternoon hours come fall.

We realize it may continue to hinder her school progress, but it’s looking like she won’t hit her goals for this year. We have already mastered a number of items with ABA and continue to maintain and add more.

Weight a Minute?

My jawbone will no longer stay charged. The company is useless for repairs even though it’s covered, no one has responded in months. The only thing I can do now is return the item to walmart and get my money back. As an emotional eater, I really miss this tool. It helped me understand my body. I used it in conjunction with myfitnesspal to get under 200lbs. This week I hit 199.8.

I am on my third month of hormones and I wasn’t really gaining too much (just the bloating was insane) and my weight would return to normal. I realized that as long as I hit 10,000-12,000 steps a day, I could include some comfort foods as long as I didn’t binge and go crazy. Not knowing my steps makes it quite difficult. I am standing on my feet, but I know I’m not walking as much as I was. I haven’t had the time for walking or for food…. It’s pretty bad when you are rushing home to stuff your face and go to bed only to get up and be driving and running errands every single day. I’m pretty burnt out.

With so much emotional and physical stress, it’s a tool that I really need to help me stay accountable because I have a hard time tracking without real-time data. I’m honestly at a point of being so burnt out that I just don’t care if I’m shoving my face with food before bed and going to sleep because I didn’t have time to eat all day. Before I could eat take out, watch my steps, and be fine. The guilt is creeping back in though and it’s frustrating. I think it’s time to invest in a Fitbit at this point.

I recognize that there is all of this stuff going on though and what I need to do to help myself put things back in order. There are going to be times that I just don’t have time, so I need to be wise and find other ways to cope. Like writing about it here…

My laptop takes forever to load but I finally ordered a case for my computer parts so I can put my new desktop together! I honestly start out intending to write, since I had issues on my phone, but it takes so long that I’m already sleeping by the time it loads up. I’m sure I need to clean out space on it too which I will do once I have the new one set up.

So I need to get back to meal planning so that I can take breakfast and lunch with me. It would be nice to have dinner ready to go when I get home as well. I just want good things for so many people in my life right now. I just can’t keep it up with it all and really need to step back and work on me. It’s hard to remind myself that sometimes, but it’s true. I am an important and deserving person in my life that needs time as well!

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Sensory overload?

My daughter informed me that she got into trouble at school today. She was so upset and said that the teachers were yelling at her. She finally explained that the fire alarm was sounding and she tried to run and hide in the classroom. Apparently the teachers ended up yelling and had to drag her out of the building. She kept telling me it made her ears hurt.

She has shown a massive increase in behaviors since recovering from adenoid and ear tube surgery. The good news is that we now understand her sensory issues are primarily auditory.

On the bus she proceeded to kick and punch people without reason. When the driver asked why she was punching and kicking, she told the driver “grandma does it to me!” This can’t be further from the truth. I have witnessed my mom spanking her when she unplugged a lamp and tried to stick a fork in the socket. My daughter laughed after being spanked as she thought it was funny. My mom has a really hard time moving around and uses a walker. She is not actually able to kick. Later my daughter explained they wrestle and grandma doesn’t actually hurt her. She just told the driver that because she wanted her to stop talking.

During ABA she has been labeling flash cards representing bad things as “good and safe” and flash cards representing good things as “bad and dangerous”. She smiles and laughs as she answers and seems to think it’s a joke. 

I think she understands but prefers to answer opposit because it’s a game to her. Maybe it bores her but she won’t tell me why and maybe she doesn’t know? I always try to talk openly and tell her when things aren’t very appropriate to say. It’s still a struggle.

I’m worried I’m going to be forced to medicate her to calm her down so that she can pay attention. I realize that sometimes it’s needed, but I have just never experienced this before, and as a mom, it’s all really scary. 

She even tore her lovey “Bumpy” the other day and I had to sew him back up. It was bad and she freaked out because she couldn’t have him to comfort her until he was fixed. 

I just wish I knew how to help her more, but sometimes I’m at a complete loss. It’s an unwelcoming feeling as a parent. It is what it is, but I can’t help but feel sad. There are days when things are beautiful and seem normal, but there are also days I wonder if she will be unable to adapt and require long term care. I just need to stop thinking about that but it’s hard not to.

I’d give so much to own our own home. A place where she can run around and just be a kid and not have to worry about adapting because the neighbors or management don’t care that she’s autistic. They think she’s just a bad kid cause she doesn’t look sick or dysfunctional. Why do people have to be so judgmental?

Well, poop!

There has been so much going on and I haven’t had much time to sit down and write about it. In fact, I just got around to fixing my laptop so that I could get to some writing! The only thing I can think to write about is my daughter’s pooping habits because it is currently a struggle for all of us. Has anyone else had issues with potty training? How do you make it work? What worked for you? What didn’t work? Am I wrong to fear enemas? Does it get better?

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Where did my posts go?

I’ve been writing every few days or so and posting to wordpress.com through my cell phone. Unfortunately, they haven’t been uploading AND they haven’t been saved as drafts. It seems like I will have to take my writing efforts directly to my laptop in the future unless I am keeping my posts short.

The problem seems to be with the browser on my phone. I actually have to wait until it finishes uploading before I do anything else otherwise it cancels the whole thing. I’m still not sure why it wouldn’t save as a draft though. For instance, if I publish a post and it’s doing the uploading status, if I switch to a different tab to read, the post does not get published. Quite annoying really. I could see if I actually closed out of the app entirely, but I’m not. It’s still open on my iphone, but it effectively cancels the act of publishing a post and the post in it’s entirety. When I return to the screen, it’s back to the write a new post page, with nothing in the box and no title entered.

Now I have to remember everything I was writing about, which pictures I was trying to include, etc. What a bummer!

I Have Fibromyalgia 

One of the biggest issues I have with the diagnosis of fibromyalgia is the inconsistency. Inconsistency of what doctors think it is, what causes it, and how pain should be managed.

Then there’s the inconsistency of people watching you deal with your illness. They think you’re fine because you hide when you have pain. Then if you are caught in pain, they freak out thinking you need to be hospitalized because they have never seen you in such a way. There are also those people who think you can take a pill and do yoga to get over it. Mind over matter.

Last is the inconsistency of these “fibro attacks”. There are some times I expect to trigger an attack, like after something strenuous like a hike or bowling tournament. But then there are times it comes on and it just ruins my plans.

It flares up and I’m completely thrown off. Try explaining to a toddler why momma screamed and cried curled up on the floor after said toddler used an elbow on momma to push herself to an upright position. These times suck.

I will note that I have more attacks when taking birth control. Even though I’m on a low dose, it still seems to make a big impact on my life.

Sometimes I get so angry when I’m in pain that I go between anger and tears until the sadness takes over or I am finally able to sleep. I don’t like being angry at anyone and I know there is no reason for it. It’s just such a hard thing to process. Granted this is usually when the pain is really bad like tonight/this morning. 

Treating the pain is not guaranteed. Sometimes something as simple as ibuprofen or a magnesium supplement helps so much. Other times I end up wondering how long it’s going to last and if anything will make it go away or if it ever will.

I know more people with fibromyalgia now, but it’s such a shady subject to talk about. No one really wants to discuss their pain. People get afraid that they will be labeled as drug addicts or that people just won’t get it if they don’t have it…. but there are so many people who do!

I know sometimes I just want to connect and maybe hear what others do to feel better. Whether it’s self medicating, prescription, diet changes, natural treatments, I really don’t care. I think it’s more about not feeling alone because I haven’t found any sort of fool proof treatment. And that I just feel bad because sometimes I need help because it is too much on days like this. It’s tough, and I don’t like it, but I’m still here.

I’m still breathing.

Cheeseburger Night!

Last night my attempt to make hamburgers came to a crashing halt. I took the package of hamburger that I let thaw in the fridge overnight out and it smelled like vinegar! I switched gears and put a frozen steak into a pan while making oven fries. Thank goodness it didn’t take too long.

Tonight I was able to make the hamburgers and deep fried French fries! I actually prefer the taste homemade in comparison to fast food. It is a bit of work, but I plan to start premake burgers and keep them in the freezer for a quick fix.


Nom!

How Do You Meal Plan?

My biggest issue is the inconsistency of a schedule on a daily basis. Things come up almost every day last minute, and when they don’t I putter about waiting for something to come because it happens so often. I never use to meal plan, but I would know and have food ready to be cooked every day whether it was in a crock pot, from scratch, or left overs. Now it feels like cooking is daunting and it’s always been something I enjoy doing. So how do you meal prep and where do you begin?!

I’ve read that consistency is the key. Picking a few recipes that the family will enjoy each week consistently. Meatloaf or meatless Mondays, taco Tuesdays, etc. I expect this also helps a lot with a food budget because you can still buy things ahead on sale and in bulk.

Pick a day to shop and prep and be consistent.

Pick recipes and make a grocery list using local flyers to calculate costs and mark sales. Get family involved so that each person gets a favored meal during the week.

Develop easy recipe for dinner on shopping/prep day.

Write meal plan on a calendar so that everyone knows what to expect.

Buy a calendar!

Label items in the fridge for the day and date to be used, for added convenience.

I’m hoping to start this a bit sooner and ease into it. I hope to start planning a full week at the beginning of May.

Does anyone have any tips, blogs or recipes to share?