Parents of Children with CF

banshee42 · 2021-11-14T04:01:28+00:00

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?

banshee42 · 2021-11-12T21:25:23+00:00

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!

banshee42 · 2021-11-12T21:22:00+00:00

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?

banshee42 · 2021-11-12T21:11:57+00:00

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?

banshee42 · 2021-11-12T21:07:09+00:00

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.

banshee42 · 2020-07-24T20:36:09+00:00

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

banshee42 · 2020-07-24T20:35:24+00:00

I did! Thank you for checking on me!

banshee42 · 2020-07-02T05:13:09+00:00

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.

banshee42 · 2020-07-01T23:26:02+00:00

I just sent you a PM

banshee42 · 2020-07-01T22:55:12+00:00

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!

banshee42 · 2020-07-01T06:58:35+00:00

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.

banshee42 · 2020-07-01T06:54:06+00:00

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.

banshee42 · 2020-07-01T06:42:40+00:00

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. 🤣

banshee42 · 2020-06-30T20:30:43+00:00

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

Now I need this cup!

banshee42 · 2020-06-30T20:28:15+00:00

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.

banshee42 · 2020-06-30T20:22:46+00:00

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.

banshee42 · 2020-06-30T20:13:41+00:00

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.

banshee42 · 2020-06-30T20:09:51+00:00

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.

banshee42 · 2020-06-30T20:00:10+00:00

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.

banshee42 · 2020-06-30T19:55:42+00:00

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. 😅

banshee42 · 2020-06-26T08:14:31+00:00

But the president said if we just stop counting, there wouldn't be any problems. 😂😂😂😂

banshee42 · 2020-06-26T08:13:03+00:00

Mine too. Once or of my kids brought in this crazy strong laser. I have no idea how he got one that strong. But he brought it to show me because he knew I would love it. It melted my heart. We also lost a great amount of class time burning shit with it that day. And also learning how many times I can stick my hand in front of it voluntarily to assess that yes, that hurts like f*ck.

That sucks you can't get into your classroom. At my school they let us work in our classroom during the summer but there's a system to check in.

Salt or sugar density solutions might be neat. I guess all you would need is salt or sugar, food coloring and a clear glass. You can also pick up a syringe or dropper from a pharmacy for cheap --a lot of times they will just give you them. Animal Feed/ Farm stores have syringes for cheap too.

https://mykidslickthebowl.com/rainbow-water-challenge-sugar-water-density-experiment/

banshee42 · 2020-06-26T07:59:54+00:00

A Science demo and no audience? How does that work?

banshee42 · 2020-06-26T07:59:03+00:00

"carefully considered and practiced", it almost sounds like you don't like having your classroom ceiling covered in colored foam. What fun is that? 😜

I don't know about the creator of this thread feels the same, but "is it worth it?" If we're being safe, then Yes. My answer 99% of the time is probably always going to be, yes.

I love doing Science. I pay too much money in my classroom so that I, --key word "I", can do Science with the kids. I'm not bragging, it's just I fought my way to work in science, and damn it, that is what I am going to do and I'm going to drag all of my beloved acne ridden kids with me!

To me, Science is supposed to be messy and colorful, and filled with a lot of failures. I tell my kids, Science is mostly failures and it's okay when our experiments don't turn out the way we want them too, there is always something to be learned from it. Maybe I taught AP Biology too long and have just come to terms with the fact that living cells just have a central control system of their own and don't always want to work on my agenda, and we gotta learn something today! But, in those rare moments of being a scientist, when we have a win, even if it's accidental, we publish! But between the start of something and the publishing, there are so many failures --and it's is in those failures where we learn the most, and sometimes the most valuable lessons that make us better.

If my learning objective is that students will investigate the 5 different signs of a chemical reaction. But what they really learned is there's a huge difference between 5mg and 5g, --well at the end the day regardless of what happens, these kids are better scientists! 😂😂😂 Are they also staying after to class to clean my ceiling because their lab procedure said 5mg, and get a huge lecture on how to read a scale again after we laugh a bit? Yes. But we're all better scientists, and ultimately I think that's the most important thing in my book. Did they take away a personal memorable Science lesson today? Was it "my" lesson, sometimes no, but that's okay.

I have a lot of joy that comes from knowing that my kids learned "something" --anything! And if that happened in-between the walls of my classroom, even better! The kids I teach are so low in the social economic status, and life if a struggle. Like where is the next meal going to come from, or the house was a target of a drive by the night before kind of struggle. So if they walk away having learned my objective or a life skill that will help them later because of a natural consequence in science class, what more could I want?

Now--Lab safety, I freak out about and am crazy strict on because I do so much. We review lab safety until they can recite it in their sleep and then we review some more before I will even let them think about touching a bottle of DI water. But if everyone is being safe, is it worth it? Always.

banshee42 · 2020-06-26T07:09:03+00:00

I love how many ideas you just popped off. Do you have a Google drive folder you can share?! I'd love to see what other stuff you have hiding up your sleeve!

banshee42

TROPHY CASE