“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.