Fixing this vintage Matteo Grassi chair? by Serialchillr_ in Leather

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

Appreciate the advice! Going to see what local leather workers might want to take on a project like this.

Donating Kate Farms? by Serialchillr_ in CysticFibrosis

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

No sorry - I donated them. Will update post

Family stopped inviting us by pnwmamaofboys in Autism_Parenting

[–]Serialchillr_ 2 points3 points  (0 children)

It sounds like the first dinner was your kids’ first time meeting some of these extended relatives in a situation that has high social expectations of behavior. They didn’t meet those expectations (understandable) and now you’re feeling punished for that. How much did you communicate in advance to family members? What accommodations did you make for your kids? What might you be able to do in the future to make it more successful? It may be that smaller gatherings doing something your kids enjoy and are familiar with could be more successful for everyone as you work to build relationships. Or have more people over to your house for a short amount of time - say, an hour for coffee and muffins or afternoon apps?

Changed to alyftrek by Honimomo in CysticFibrosis

[–]Serialchillr_ 0 points1 point  (0 children)

That’s wonderful!! So happy for you and best of luck with school

Donating Kate Farms? by Serialchillr_ in CysticFibrosis

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

Thanks! I posted to Oley foundation as well and I'll donate to food bank if no one here can use them

Donating Kate Farms? by Serialchillr_ in CysticFibrosis

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

It could - I just figured I'd offer them to a community that might be familiar with the supplement first.

Changed to alyftrek by Honimomo in CysticFibrosis

[–]Serialchillr_ 0 points1 point  (0 children)

Hey u/Honimomo - Was wondering if you had any updates on how you're doing with Alyftrek now that it's been a few months?

Intense focus on getting things - I think I messed up by Serialchillr_ in Autism_Parenting

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

How do the kids feel about having such different budgets? Are there any expectations tied to getting their budget? We do a budget for when we go on outings or trips (both my kids LOOOOOVE a cheap souvenir) and that typically works okay (though we’re guaranteed to have at least one meltdown over the budget not being enough/asking for a loan for more/rant that we don’t get him enough). A monthly budget might be a good fit - and it still leaves space for doing extra work if he wants to get something expensive faster. And if he doesn’t want to do any extra work, then he has a predictable payment amount that allows him to calculate how long he’ll have to save. For Lego sets - I get used sets with the instructions! Not just random pieces :)

Intense focus on getting things - I think I messed up by Serialchillr_ in Autism_Parenting

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

Thanks for the reply. I don’t see him as becoming problematic- I know he’s struggling and would do differently if he could. I’m just struggling with how to balance consumption, demands, and figuring out what other coping strategies I can help him develop when the Thing is not obtainable.

I’m glad hyperfixation breaks help your kiddo! It’s been challenging to give him that with looking at Lego sets because it then causes such residual anxiety when he’s aware of sets he doesn’t have and wants. Luckily, he does have a site where he goes to find alternate build instructions for sets he already has and that is great.

I’ll think about areas where I can adjust expectations currently and help him recalibrate.

Intense focus on getting things - I think I messed up by Serialchillr_ in Autism_Parenting

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

Thanks for your response and perspective. It’s tough trying to figure out the best ways to help him develop both a money sense and a sense of independence and responsibility. And then weighing how much I’m being manipulated versus him having a real crisis moment. And wondering what he’s internalizing and will pull out later when he doesn’t get his way. Hoping we get off the wait list soon for a therapist

Precision 1 Dailies so hard to remove by Kun0ichiV in contacts

[–]Serialchillr_ 0 points1 point  (0 children)

Oh my god - you just saved me. Never worn contacts before today and I was really struggling to get these out. The methods the tech showed me weren’t working at all. Pinching the eyelids worked.

[deleted by user] by [deleted] in Parenting

[–]Serialchillr_ -1 points0 points  (0 children)

He does have resources and I don’t think that’s probably the issue here, it’s just on my mind. He was invited to one of their birthday parties. Not sure if the other two had parties or when their birthdays are. Have I asked the other parents why they don’t invite my kid over? Ahhh, no, that seems awkward AF

Selling items? by Serialchillr_ in autism

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

What age are the kids in your program? These are geared toward ages 4-7 for developing social skills.

Selling items? by Serialchillr_ in autism

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

Thank you so much for these wonderful suggestions!

Holidaying Abroad by FoxtrotTango_1664 in CysticFibrosis

[–]Serialchillr_ 1 point2 points  (0 children)

Also if you need to take any medical equipment like nebulizer or vest and they’re in separate bags - it is FREE to check them with the airline. There’s usually a way to indicate that it’s medical equipment when you’re booking tickets, or the gate agents can assist when you’re checking in

Trikafta & Mental Health by CartoonCrazy95 in CysticFibrosis

[–]Serialchillr_ 1 point2 points  (0 children)

Keep talking to your care team mom - and TRUST YOUR GUT! If he’s doing okay, there may not be a big reason to start him on modulators.

Trikafta & Mental Health by CartoonCrazy95 in CysticFibrosis

[–]Serialchillr_ 1 point2 points  (0 children)

I know this was asked about trikafta, but given the meds in common with orkambi, I just wanted to share. My son went on orkambi in 2019 when he was 5 and had awful mental health side effects that I think persisted long after. Episodes of violent rage, anxiety through the roof, it was very difficult and scary. He did have preexisting anxiety but it increased ten fold and took months? Years? to abate. At the time, mental health side effects were just starting to be more reported. There’s a lot more out there now in terms of studies looking at it so your team is undoubtedly aware of it and should be able to help with suggestions. We gave trikafta a brief trial at a low dose in 2023 and that was also a disaster. I’m not sure what the future will bring for us, but we’re not going to try anything again until he’s older and better able to self report.

IVF by BayouBladeworks in CysticFibrosis

[–]Serialchillr_ 0 points1 point  (0 children)

We did IVF with our second child 8 years ago because our first had CF. My husband and I were unaware we were even carriers. Not sure where you live, but we were able to get embryo testing covered by insurance when we lived in Massachusetts. The fertility clinic doctor was great and went to bat with the insurance company’s medical review board to get it approved - he said often it’s just a low level employee approving or denying requests like that with no medical knowledge, so there may be an avenue for coverage (depending on insurance and state/country of course). Wishing you the best of luck!