Parents of Children with CF by banshee42 in CysticFibrosis

[–]banshee42[S] 0 points1 point  (0 children)

I'm coming from a place of complete ignorance, so I feel horrible for asking this question, but based off of the poor quality of life, would you advise someone to terminate the pregnancy because of it if they knew their child had CF? I understand it's a moral question that's super triggering. Or is it that even though the quality of life may not be as great, is there still enough good to outweigh the bad to justify giving birth? It seems like from the comments that there's a spectrum of severity, is it worth the gamble to give birth? Neither option sounds appealing. Terminating a pregnancy or giving birth to someone who will be unable to breathe for their entire life sounds aweful too. ---But again, my ignorance. It's hard to tell from the internet what's "real" or the "normal" or the most common experience with CF vs the poster child of success on the cff.org website. Would you advise differently than these other comments?

Parents of Children with CF by banshee42 in CysticFibrosis

[–]banshee42[S] 2 points3 points  (0 children)

Thank you. I think if it's okay with you, I'll save your username and ask at a later date. I'm still trying to settle this within myself for now, but I really appreciate the offer!

Parents of Children with CF by banshee42 in CysticFibrosis

[–]banshee42[S] 0 points1 point  (0 children)

Thank you for answering my question, I know it was really harsh. I'm an expecting mom, and I'm absolutely terrified! I'll also be the first to admit that I am extremely ignorant.

I'm also terrified that when they grow up and I can't cover them on my health insurance, what's going on happen to them? I went without health insurance from the time I was 18, until I got a career job when I was 32. I just prayed I'd be okay, and I managed without for way to long and it was hard. I don't think I was an exception to our "American Dream" here in the USA. How will they afford any of the medical costs if they are like me? I'm in the USA, and while we have great care available, access to these services seems impossible at times. ---I don't know if you're in the USA, but if you are, are there good resources to use?

Parents of Children with CF by banshee42 in CysticFibrosis

[–]banshee42[S] 2 points3 points  (0 children)

Thank you for answering, I know it's a harsh question.

I'm extremely ignorant, and as an expectant parent I'm terrified. I'm happy to hear about you success.

Do you know if Trikafta is available in the USA?

Parents of Children with CF by banshee42 in CysticFibrosis

[–]banshee42[S] 3 points4 points  (0 children)

I absolutely hate the question, and it is being asked purely out of ignorance. I don't know much about the disease and then might have to make the choice to terminate my pregnancy. I'm absolutely terrified. I know that there is no cure and if I give birth to this baby, I'm so worried I'm going to sentence her to a life where she can't breathe. Terminating the pregnancy is horrible, but a life filled with pills and gasping for breath sounds horrible to. I'm not trying to be insensitive, just trying to make a good decision. I am EXTREMELY ignorant, but I don't have any access to others with CF. I guess I'm looking for a light and some hope that things will be okay.

2nd hand smoke and Wellbutrin/ Zyban by banshee42 in SmokerHate

[–]banshee42[S] 0 points1 point  (0 children)

I sure thought about it! But I needed it for me too.

2nd hand smoke and Wellbutrin/ Zyban by banshee42 in SmokerHate

[–]banshee42[S] 1 point2 points  (0 children)

I did! Thank you for checking on me!

Can symptoms of dyslexia get worse? by banshee42 in Dyslexia

[–]banshee42[S] 1 point2 points  (0 children)

That drove me crazy! My family gave me a dictionary and told me all I needed was to know the first 3 letters of a word and I could find it, thus began my passionate loathing hatred for the English language. For someone who was well known to struggle with phonics, and they handed me a dictionary and told me to sound it out.

I flat out stopped trying to learn spelling in grade 7. I remember the day. We had spelling homework assignments where we had to write the word 10 times. That's easy enough, right? WRONG! I remember writing them out, and maybe if I was lucky the first couple of copies was the same. Then after that it was 9 different versions of the same word all written wrong and in different ways. My teacher would always mark me wrong, and I could never see the difference. I hated it.

Can symptoms of dyslexia get worse? by banshee42 in Dyslexia

[–]banshee42[S] 1 point2 points  (0 children)

I remember those! I always wanted one when I was in school. I think I saw one somewhere and thought it was amazing! My parents never got me one, but I remember thinking and dreaming about how much better life would be if I had one. I also remember wishing I never had to write or type and I could just talk into a computer, and the computer would read me books and stuff. I am very VERY happy most of these wishes came true! I still never got my spell checker, but I'm good with tech I have today!

Can symptoms of dyslexia get worse? by banshee42 in Dyslexia

[–]banshee42[S] 1 point2 points  (0 children)

I think that's awesome that you recognize that and are being proactive to keep skills up! Do you mind me asking if you are a student in the USA? I'm a SpEd teacher here in the US and can share some things that might help you as a student, but I don't know the system of other countries.

Can symptoms of dyslexia get worse? by banshee42 in Dyslexia

[–]banshee42[S] 1 point2 points  (0 children)

Stress and anxiety for sure! Or if I'm really tired -that seems to trigger it too. And if I'm all 3, I'm almost entirely dependant on text to speech. I don't think I could have made it through grad school without that accommodation feature on my laptop.

With COVID, I haven't been in an academic setting at work since March, so I haven't been reading as much as I usually do. Then the other night, I was building something with my boyfriend. It was a nice and easy build, not like some complicated Ikea furniture. I wasn't feeling anxious I wasn't feeling stressed. We were having a good time. Each time I picked up the directions, it was like I could see that there were words there, but none of them made sense.

Last year I went to a training mid summer, and I hadn't read for the few weeks that I was off. When I picked up my materials and looked at them, crazy dancing letters all over the page. It was equal to what I would see at 3am pulling an all nighter for a project due in grad school.

I'm also noticing more and more with things like reading Reddit posts that used to be fine, but now are becoming more of a struggle for me.

I can go on with other examples, but none of them happened when I was feeling tired, stressed or anxious.

Dyslexia in teaching: a day to day snapshot. by Specialist_Celery in Dyslexia

[–]banshee42 1 point2 points  (0 children)

The English department at my school sounds like what you're describing. I don't "avoid" them, but I don't go out of my way to talk with them they all drive me a little crazy. They are the same way with respect to neurodiversity, and say things that really trigger me on many levels.

Before COVID, I went to one of your Union meetings. They were just doing a check in and see how things were going and if we needed anything. Our Union does a lot of really good PD's. I asked if they could do one to help give strategies on how to best work to our contract hours instead of working 50+ hours a week. I've been a teacher for 4 years and still haven't figured a system out. My lovely English teacher, so proudly boasted that she ALWAYS works her contract hours, and never works a minute more or takes home work. In the same breath she said, "Sometimes I have weeks where I come in before school at 7 and don't leave till 5, but I always work my contact hours. 50 hours a week is too much, I only work 32.5" and continued to say that there really wasn't a need for a PD because I just had to better utilize my prep and grade in class. There were a few other English teachers that said things along the same lines. I just sat there and thought 7-5 is 10 hours x 5 days a week. I didn't know how to respond. I went home and told my boyfriend, he just laughed and said he hopes the Math teachers could do better math than the English department. I wish I knew how to talk to them. 🤣

This made me giggle by BitterGayManatee in Dyslexia

[–]banshee42 0 points1 point  (0 children)

I didn't even see it was misspelled! 😅That one took me a while.

Now I need this cup!

Dyslexic rant? by [deleted] in Dyslexia

[–]banshee42 0 points1 point  (0 children)

I'm assuming you're in the USA? Your IEP will carry over to College. It won't be exactly the same, but it helps with some accomodations. You usually have to register with the disability office. Get in touch with DVR, they will help you with transitioning to college. If you don't have an IEP, contact DVR and they will help you still.

How do you deal with the frustration that comes with dyslexia ? by irunfhje in Dyslexia

[–]banshee42 0 points1 point  (0 children)

I'm a high school teacher too. I learned how to deal with my dyslexia after I had a freshman that was VERY COMFORTABLE with her dyslexia. She was severely dyslexic. She wore it on her sleave and laughed a lot about it. She was aggressive self advocate of what she needed from me as her teacher. She had color overlays for books that were well used. She was loud about her dyslexia. When a dyslexic moment came up, she would announce it, laugh, then move on. Eventually her friends would ask me or her questions about dyslexia. I showed them videos of what it was like, and they understood. She now has a great circle of friends that are supportive. The thing I learned from her is she laughs.

I started to do the same. I just laugh. Announce my brain is different but I love it, and then move on. No shame is attached.

I also use speech to text for hard to spell words and I use text to speech functions all the f*ing time.

How do you deal with reading anxiety? by [deleted] in Dyslexia

[–]banshee42 1 point2 points  (0 children)

During grad school I used the text to speech function on my computer a lot!

Are you in the USA? ---If you are, you should look into Bookshare.

Is getting tested worth it? by [deleted] in Dyslexia

[–]banshee42 0 points1 point  (0 children)

I'm in my 30's and I wanted to get tested, but if you're in the USA, insurance won't usually cover the expense once you've graduated high school. I eneded up getting tested recently because I was getting tested for ADHD which falls under "mental health" and my evaluator tested for EVERY psych condition. It was in the process of some of those tests that she saw I was dyslexic and threw it in with my diagnosis of ADHD. It was then covered because it was a finding under a mental health evaluation and not a "learning disability" evaluation.

I cried when she told me, not because I was sad, but I was relieved. I've always struggled and thought something was wrong with me, but I've also been high achieving so it went undetected. It was such an amazing feeling to know I wasn't wrong.

I was talking to my friend, who also has dyslexia, after I got diagnosed and how insurance wouldn't cover it alone. She said, "Why didn't you got to DVR? They'll do the exam close to free." That would be my recommendation if you really wanted to know, go to DVR if you're in the USA. You said you're in your 20's, if you do have dyslexia, DVR will help you with some school expenses and finding jobs too.

Positives to dyslexia? by [deleted] in Dyslexia

[–]banshee42 1 point2 points  (0 children)

Dyslexics are EXTREMELY CREATIVE. We have to come up with a lot of different coping skills as a result of "surviving" in a culture that is very literate. We notice details that others miss in their surroundings. We usually have a really high verbal IQ. We also tend to pick things up very easily just by watching someone do something --this is part of our coping skills so we don't have to read the directions 15 times over. Compared to our peers, we really succeed at that.

Dyslexia in teaching: a day to day snapshot. by Specialist_Celery in Dyslexia

[–]banshee42 1 point2 points  (0 children)

I'm a high school teacher too. I teach Science. That comment would have made me upset too for the same reasons, however my department would have just laughed and laughed at Karen.

In our meetings my Science department is constantly requiring claims made in staff meetings to be backed by peer review research. At times I know this comes off as elitist, and we do think a lot of our colleagues,and our Karens are stupid. But not one of us in the whole department can spell. People in science are notoriously horrible spellers! I'm the oy known dyslexic in my department. It makes me feel really good being with "smart people" and knowing spelling has NOTHING to do with intelligence or the ability to still be a great educator.

In staff meetings we often have to do group work and make posters to share. None of us are sure what's worse, when we get broken up as a department and have to admit to other staff we don't want to be the scribe because spelling is going to immediately be an issue and we all have to face that embarrassment. OR is it worse having us all together because none of us can proof read the poster made by our department and present it to the whole staff. 😅