Category Archives: Awareness

All, Awareness, Random

IEP Advice

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I’ve been reading a lot about people having issues with this recently. So here’s my advice, as I literally just went through this.

*** If you have an IEP for your child, make sure the school is adhering to it. If not, call a meeting to address it right away. Make requests even if you think they’ll say no. They have to accommodate your child within reason. Always push for whatever your child needs to have the best learning experience possible. ***

I’ve had an IEP for Scarlet for several years. She is autistic with Tourettes, DMDD, ADHD, anxiety, and more. At her own enthusiastic and long thought out request, I switched her from five years of specialized online school to in person learning this year. However, the first day was entirely too overwhelming for her. As much as she wanted to do it, she only made it a few hours, and didn’t return for a week. In the meantime, I requested partial online, part in person learning with shorter days, plus a few other accommodations. They took the day to review it with the director since they don’t do this for anyone else. They approved all of it!!! As she gets more comfortable, or if it doesn’t work out, we can make further adjustments. She went back to school yesterday and loved it!

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All, Awareness, Financial, Random, Updates

The Struggle Is Real

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The struggle really is real, and is a major pain in the buttocks. I nearly threw in the towel and accepted defeat, once again. I had all sorts of plans to share a whole lot of information, updates, financial tips, the freebies I receive, and so much more. I really do want to help everyone I can, without pestering them.

Except, I encounter a slew of roadblocks along the way of trying to do this. I admit that a lot of this is in my head, literally. I have OCD, ADHD, Anxiety, Depression, and on, and on. I’m in a never ending battle with my own self. My mind is constantly going in a ridiculous amount of directions at triple speeds, and I can barely catch up. It’s exhausting, mentally and physically. I also have a ton of stomach issues that are triggered by every little thing. Then add some memory loss, chronic pain, and myalgia to the mix.

Not to mention, of course, being Mom always takes precedence over everything. I have two daughters, our Emotional Support dog, and several fancy rats that keep me on my toes. My youngest daughter has Autism, Tourette’s, DMDD, among other things. I stay in close proximity to her at all times and am always on alert. So it’s sometimes hard to manage other things as well.

I’m not saying any of this as an excuse or for sympathy. A lot of times, in some ways, I actually feel awkward discussing it in general. Yet, I also do want people to know what I experience on a regular basis. I think it helps to know where people are coming from.

A lot of things seem to be a constant struggle for me. It doesn’t matter how tiny or ginormous the issue may be. Nothing really dictates my response to things. For example, a stack of dishes could fall and smash everywhere and I’ll say it’s totally okay, as long as no one was hurt. But God forbid a cup is out of place in the cabinet. I will wreak havoc and lose my mind.

This is just a general recap of most of my sharing experiences…

I find a deal (or even anything in general) that I want to share, and have to decide where to post it. I think how it should be from a central location that can be shared from, but sometimes jump to a different platform. I get hyper focused, putting more thought into it, dissecting it, rewriting again. I want to include as much information as possible, but not be too wordy. I get side tracked a few times, I rethink how to word things, I wonder if anyone will really look at it and if so, what will they think of it, or of even of me. I start to second guess myself, and then my life. I get side tracked again. When I click the app again on my phone, I end up swiping it away. It is either lost forever or saved in my drafts, where I might look at it much later in the future when I’m cleaning things up.

I know, it just sounds like I’m being ridiculous and I should get over it. Believe me, I’ve tried. I push myself all of the time. Sometimes, somehow the more I try, the worse it gets. I can easily become a huge train wreck in no time.

So, in an effort to share deals quickly and easily, without having a mental breakdown or worrying about spamming everyone, I think I may make a Telegram channel. I’m still working out other platforms, so who knows. I also thought about making a blog post for each deal, but I’m pretty sure that my email subscribers would hate me and they will quickly unsubscribe. That would make me extremely sad.

If I decide to use this new channel, my intention is to post often throughout the day. In most cases, that won’t happen. But if it does, it shouldn’t bother anyone too much since they specifically signed up to be inundated with all sorts of savings tips, deals, money makers, rebates, and more.

I suppose I’ll create it and see how I feel about it. Unless of course, no one uses it?

Please don’t let me fall down another rabbit hole…

Does anyone even use Telegram? What is your favorite app to get notifications? Do you have any suggestions for the best ways to share deals quick/often? Comment below with any tips you may have for me.

All, Awareness

Autism Awareness Month

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“April is Autism Awareness month, but every day is Autism Awareness in our home.” This is definitely true.

My youngest daughter Scarlet is 14. She was diagnosed with Autism in 2017. She also has Tourette’s Syndrome, ADHD, Disruptive Mood Deregulation Disorder, and Anxiety. It’s been a very difficult struggle for her on so many levels. It’s also sometimes difficult to pinpoint what is distressing her in particular, since there are so many different symptoms and triggers depending on what is going on.

She has really come to embrace her disabilities, and we have a much better understanding now. I pretty much let Scarlet do whatever she wants to an extent. She’s a good kid, very intelligent, and understanding. She just gets loud and her emotions are extremely heightened. I never yell at her, unless absolutely needed. We have certain code words or things I do to indicate that she is getting out of hand. But that is reserved for when she is screaming or being extremely loud for no reason. When that happens, I yell the word “octavius” and everyone knows it’s time to calm down.

Scarlet’s biggest issue really now is with school. We tried regular school on a few different occasions. Since that didn’t work out very well, we moved on to cyber school a couple years ago. It’s been a bit better, but still not going great.

She gets really overwhelmed easily with school. Last year, she completely shut down and refused to do anything at all. Nothing mattered whatsoever. This year has been a lot better. Scarlet has mandatory live classes that she attends daily. She even participates in class. She gets a decent amount of work done during school. Once in a while, she will need a break. I let her go because of her massive progress she has made already. I don’t want to push her too much and have her shut down all over again.

Her school has her set up in the 504 program with special education. Scarlet is also in a new class where there combine two grades into one. She started with seventh grade and would graduate from eighth. She only has two subjects, with study halls, support sessions, and school therapy. She has difficulty processing things so I sit through each class with her to make sure she is focused and understands. If not, I explain it to her a different way. She made Honor Roll in the first marking period, but failed the second. She has a plan set up to finish out the year in better shape. She will then be in eighth grade, with an opportunity again to graduate ninth by the end of the year.

Other than school, there’s just a few times here and there that there has a major flare up or what we call “episodes”. Regardless, she still gets bouts of massive tics. Whatever she may have going on, she holds it in a bit when we are in public. If I’m with her, she will often hang onto me, sometimes digging her nails into me too. She will especially hold back around certain family members. When that happens, she tends to shake really bad. They don’t believe in disabilities and blame me for Scarlet’s issues. Once she gets home, she lets it all out and it’s usually pretty bad for a little bit.

I hate seeing Scarlet going through so much in general, but I’m very proud of her. She has made incredible progress. She is very open to anyone who wants to know what it’s like to have disabilities and what she experiences on a daily basis. She also loves helping other people who are having issues.

While it’s definitely been difficult for everyone involved, it has also been a positive experience of learning and growing together that has brought us even closer and more in touch with each other. I appreciate that very much.

All, Awareness

Tourette’s: Scarlet’s Vocal Tics

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I previously wrote about my 13 year old daughter, in My Scarlet Always Sharing. Several years ago, she had been diagnosed with Disruptive Mood Dysregulation Disorder, Autism, Tourette’s, Depression, and ADHD. Scarlet is all about awareness, sharing her experiences and feelings, and helping others. We chatted about this multiple times, so I will start a new section for her shortly.

Today, I wanted to share an audio clip that Scarlet recently posted on her Instagram. (Don’t have your speaker volume too high when you listen to it.) She wants others to know what it’s like when she has vocal tics. She described it in her own post as “VOCAL TICS: Tic attacks can last for a few seconds to sometimes minutes. They are extremely tiring and sometimes hurt if physical. #tourettesawareness”.

What you will hear is just one of a series of vocal tics that Scar experiences. She sometimes will scream, make loud noises, or shout words repeatedly. This happens several times a day, along with her physical tics. Those may include clapping, hitting things or herself. These tics can be especially tiring and painful for her. It’s sometimes difficult to differentiate what is happening. I can tell for the most part if she is okay, or if I need to check in on her. But when I’m not sure and she is irritated, I run the risk of escalating things even further. I try to approach everything lightly, meanwhile I’m a mess inside. I’m always worried about my baby and how everything affects her. It’s my job to make her environment the best I possibly can.

Here is the audio clip I mentioned. Again, don’t have your speakers too loud.

All, Awareness

Scarlet’s Dark Art

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So my friend invited us to her “Dark Art” event, benefiting Glaucoma research. The idea was to paint as though you are blind, using unknown colors and items to paint with. It was this past Sunday, but we weren’t able to attend. I thought it would be nice for my daughter Scarlet to still participate from home. When I told her, she was really excited about doing this. Scarlet loves to paint and loves to help others with awareness. So it was right up her alley.

Once I had everything in the area covered, we got started. I blind folded Scarlet and gave her a few random items. I wasn’t sure what she could really use but I grabbed a pencil, a straw, some cotton balls, q-tips, and a plastic paint tool. I picked out pink, purple, yellow, and pearl paint colors. Then got my camera ready to record and take pictures, of course.

She started off with the cotton balls for the sky. At one point, she turned the canvas sideways without realizing it. Part way through, we had to pause filming. There was way too much paint all over her hands, so I had to run to get wet wipes. Her eyes stayed covered the whole time. I even called her out at one point just to make sure. Later in the video, she reached back for a wet wipe and I yelled “Don’t touch me!” lol.

It was very messy, but she had a lot of fun. We will most likely do this or something like it again. For the event, my friends had to paint for an hour and a half. Scarlet painted for a lot less than than that. We got about six minutes recorded and lots of pictures. Ignore the part where I fall through Scarlet’s hamper LMAO.

All, Awareness

My Scarlet. Always Sharing, Helping

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Very few know this, but my youngest daughter suffers from a few disabilities. I belong to several Facebook groups relating to Autism, Tourette’s, Children with Disabilities, and so on. I like to read through the posts and think about how it relates or not. On a very slim occasion, I will comment with some of our own experiences. I say slim because I rarely post or comment on anything to begin with, let alone a stranger’s post in a public group. Not to mention, while they may be reaching out, they may not care what I have to say.

I keep to myself about a lot of things, especially with how the world is today. But I really wouldn’t mind sharing our experiences or any suggestions, if it will help anyone else. My daughter also feels the same way. We’ve talked about it often and she loves to help others. With that said, I’ll give you a little bit of her background.

My daughter Scarlet is 13 years old. She had a seizure right before her first birthday. She’s had asthma and allergies for most of her life, along with severe eye problems and trouble walking. Several years ago, she was diagnosed with Disruptive Mood Dysregulation Disorder. They later said she had Autism and referred us to a Neurologist, who then confirmed her diagnosis for Tourette’s. She has since been diagnosed with Depression and ADHD.

Scarlet has been through a lot of medications, doctors, therapists, coping skills, emotions, and broken items. It’s been a long and windy road. There is still the occasional meltdown along with bouts of severe tics, but we manage it a lot better. Some of those meltdowns have been my own, wishing I could do better and do more to help her.

That’s just a few tidbits. Since I know Scar is comfortable with it, I think I might share a bit more about our experiences here. Maybe some coping skills we have learned, adventures we end up on, symptoms, silly moments, and so on. I might add some of her art as well. She loves to paint. It helps her a lot. She has a lot of great qualities and is full of so much love. She is my Sunshine.