Tag Archives: tourettes

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

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

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.