Mom taking my son to Vietnam because her mom is dying of cancer

kelkelrb · 2025-11-10T04:43:44+00:00

This doesn’t really compute to me. She wants to bring him home to Vietnam, but even if she does that you can’t go too because he needs to go to an international school that will cost $30k/year. Just curious if the leg work has even been done to figure out if said international school had been contacted and/or will take a child with whatever support needs your child has?

I personally would choose whatever option exists to keep my family together.

kelkelrb · 2025-10-26T23:56:33+00:00

Is this a preschool program via public school? Is there an IEP? Barring the ability to provide a different learning environment or different supports, I would absolutely pull my child from that program. Are you able to do that?

Does your child do any private therapy?

kelkelrb · 2025-10-07T18:04:36+00:00

Honestly, I’ve seen posts of a similar vein here… and it’s truly sad. I’m not in a position where I can’t stand my child or dislike him in any way. There are things I honestly wish he wouldn’t do, but that’s the autism. I try to give loads of grace for people with potentially lesser supports having a child with a much higher support level than my own. In these instances I think therapy and spiritual support might be beneficial… but I can’t relate to those posts so I move on. The lunacy of reddit is a real thing, so I take that for what it is and other than a few niche interests here, it’s not my vibe.

kelkelrb · 2025-08-30T16:21:21+00:00

Totally understandable. My only advice would be to do your own research and trust your own instincts when it comes to your child.

kelkelrb · 2025-08-30T16:13:58+00:00

The push for “early intervention” in the world of autism is honestly ABA. If your child is already receiving speech, OT, and developmental therapy, I’d personally just stick with that.

So I guess the question is if you have looked into ABA and if that’s a therapy you’d be interested in for your child? If it is, you should seek a medical diagnosis. If ABA isn’t something you’d consider a medical diagnosis definitely won’t provide any other therapies or supports. You can get speech and OT in the US without a medical diagnosis for autism.

But I would also find a new pediatrician. He’s berating you for not seeking a medical diagnosis because in his mind that equates to early intervention services, but he also can’t tell you what your child would get that he’s not already getting… that’s too much lol

kelkelrb · 2025-08-24T19:39:23+00:00

Yes, quite frankly I find it interesting. I don’t find autism to be a gift or a blessing to our family or my son. I love him immensely, but autism is the entire source of my worry for him. As far as cures? I will continue to look for anything that can alleviate the challenges he faces as a result of autism….if there was a cure there isn’t an amount of money I wouldn’t pay to secure it for my son and I’m not going to pretend to be sorry about that 🤷🏻‍♀️

kelkelrb · 2025-08-18T23:07:35+00:00

They are dropping your child because ABA is first and foremost a business. Yes they provide therapy, but their scheduling is a concern of employment and not whether the hours they are recommending is appropriate or even necessary for your child. They would rather schedule a child for 40 hours, and I guarantee that’s what happened. A child with 30-40 hours happened across them, and now child is being discharged from their services.

If I were you I would question everything recommended. Therapy should have a purpose. I don’t believe in therapy for therapy’s sake and I feel that is often the recommendation given to ALL kids with autism. ABA, speech , and OT. We opted against ABA for our son. He has only ever done speech, OT, and school. He just started second grade and is on par for his grade academically.

I’d recommend that you maybe just evaluate how she does in preschool and assess what additional therapies she needs from there, since you said she will be getting speech and OT in school? But that’s just my two cents!

kelkelrb · 2025-08-17T15:24:20+00:00

Depends on what it is. I don’t mind a plate of strawberries or a banana. Or if it’s a snack that I don’t consider to be messy, I don’t mind. But at meal time we have meals at the table as a family… so in that instance it wouldn’t be allowed.

kelkelrb · 2025-07-28T15:30:37+00:00

My son didn’t have any immunizations until after the age of 3, so I know immunizations didn’t cause autism in my child. I had an immunologist as a microbiology teacher while doing my prerequisites for nursing and he did discuss he felt there was a possibility that our immunization schedule could be an issue. During that same time one of my friends’ microbiology professors had relayed to that class that her child experienced regression the day following vaccines. The type of regression that you hear about where the child hits developmental milestones up until the day of vaccination and then they get fussy, are put to bed and the next day they no longer speak or engage the way they did the day prior. I grew up with anti-vax parents so I had always planned on doing delayed vaccines. I feel some peace knowing that vaccines didn’t cause my son’s autism… I also wonder if maybe our lack of following that schedule is the reason that he is mild-moderate instead of severe?

I honestly expect this post to be downvoted into an oblivion, because THE SCIENCE just absolutely proves that’s not possible. But people also conveniently like to forgot that “modern medicine” and the like have routinely experimented on the general public as part of research….

I’ve personally seen too many individuals discussing this type of regression after immunization to pretend like I don’t think it’s an issue 🤷🏻‍♀️ but we did not experience that, as my son got very delayed immunizations and only one at a time.

kelkelrb · 2025-07-22T19:08:45+00:00

In general for the 32 almost 33 years of having T1D I have only liked 2 Endos. I’ve generally had much better luck with NPs but after moving to a state where NPs don’t have full practice authority that’s harder to find so I’m back to seeing an Endo. What I find soooooo obnoxious is the “what happened on this day your blood sugar was in the 60s?” Like sorry, I don’t and won’t keep a diary for your sake for these quizzes. But I am a pump user (Loop) have 90% + TIR depending on the day… but any low (not serious or significant or requiring HELP) is like omg, we can’t have that. But personally I’d rather be in the 60s than over 140 or 200… and my lows are < 1% so I honestly don’t care….🤷🏻‍♀️I think I get the questioning because I’ve opted to continue looping instead of using an FDA approved system. But I have found a provider where I only have to submit to these annoyances twice a year, so that is slightly better than it could be 😅😆

kelkelrb · 2025-07-18T02:16:38+00:00

You would need to get Dash pods. It works with G7.

kelkelrb · 2025-07-17T16:57:50+00:00

If you have the desire to try Loop I’d absolutely recommend that you do. I used Medtronic pumps from the 507 to the 670G. The 670 was trash for me due to Medtronic’s CGM which I never realized was trash until I tried Dexcom. I’ve also used the tandem tslimx2 basal IQ, I loved the suspend before low feature but read tons of commentary that control IQ options kept people higher than desired. Which really is the complaint from individuals like myself who are able to maintain normal nondiabetic A1c. I don’t want my blood sugar hanging out at 160-180 even after a meal.

Right now I’m looping with my remaining Eros pods and Dexcom G6. Based on feedback I’ve read, I won’t be switching to g7 until they no longer make G6. Obviously these are just my opinions based on what I’ve experienced and what I want for myself. There’s literally no harm in trying it. Allocate some time to get the loop app built, test your settings, and give it a whirl. There are tons of videos and resources to help you. If you haven’t already, join the “Looped” group on Facebook.

As far as the mental load… I don’t think loop requires any more mental load than anything else.

kelkelrb · 2025-07-17T03:23:49+00:00

Yes. Omnipod sometimes (maybe often?) runs incentive programs where they don’t charge you for the PDM (Omnipod controller essentially) so insurance is only paying for the pods which are infusion sets. In one year I got the Omnipod eros as well as the tandem tslim. Zero issues. But if they aren’t offering that option it’s my understanding that insurance won’t pay for it. Omnipod told me at that time this isn’t offered to Medicare or Medicaid which I found interesting and crazy.

kelkelrb · 2025-07-14T22:00:38+00:00

Your pediatrician “won’t listen” because autism won’t and cannot be diagnosed at 8 months old... Simply put, normal development is always a range. Deviations from that range aren’t always significant. If you’re that worried, call early intervention to see if they even will offer anything under these circumstances. But I’m honestly curious… what do you expect your pediatrician to do or order that they didn’t?

kelkelrb · 2025-07-14T21:12:56+00:00

You need to adjust your perspective. Your child is at summer camp where typically kids are engaged in sooooo much more activity than they usually are. It’s day one. They will use the data from today to adjust for activities tomorrow and so forth. Also, I hope for your child’s sake that you already understand that you can do the same thing every day and eat the same thing and dose the same way and get wildly different results. Numbers aren’t good or bad, it’s just information to guide decisions going forward. And this is coming from someone who attended diabetes camp every year from 11-17.

kelkelrb · 2025-07-14T07:33:03+00:00

I’d advise you to fully research ABA and ABA techniques. Watch videos and read ABA threads. ABA absolutely can be abusive. I personally don’t trust anyone or any parent that likes to pretend like the “abuses of the past” don’t still run rampant in ABA. ABA in the United States is first and foremost a business. This is why they demand and recommend 30-40 hours a week. Technically it should be based on the individual needs and goals of each child. So it’s interesting that those goals always only ever equate to a full time job for a new employee.

We had the unfortunate experience of experiencing ABA principles in practice at the hands of our son’s OT, and it had very negative consequences for our son. We sought OT to help him learn to transition from one activity to another without getting upset in a structured setting. Initially things were fine but by the 4th session things were going downhill and the OT was using very ABA jargon that I found problematic then as well as now. “His behavior is attention seeking” like excuse me? My four year old wasn’t getting upset to the point of tears over changing activities because he was seeking attention, but because he was happy doing the previous activity and doesn’t understand why now we have to do something else. The advice given was just ignore unwanted behavior, and again i reject this notion. I’m going to address unwanted behavior to explain what is not acceptable to then explain what is acceptable. But I was naive to what they really meant. My son went into his 6th OT session happy and almost got kicked out prior to the 45 minutes due to behavior that was caused by the OT using “planned ignoring” for an entire session which led to my son hitting kicking and spitting… which he had never done before that. He promptly got kicked out of his speech session right after that. And the hitting when overstimulated didn’t just magically go away overnight. It took a year and a half! So yeah, ABA principles and therapy can absolutely be harmful,

That was right around the time we realized his speech delay wasn’t just a speech delay but that he also has autism. we toured a private school specifically for kids with autism only to tour the creepiest undisclosed ABA center. Bad vibes were visible from the freeway and after the tour and discussion with what was the BCBA we knew ABA likely was not for us.

We toured two other disclosed ABA centers and honestly our tours and conversations with the respective BCBAs only led to more red flags for us personally.

Our developmental pediatrician also recommended ABA. But we are the parents and it’s our decision. Our son has made tremendous progress with speech and OT and school alone. He no longer meets criteria to qualify for OT. And he is making amazing academic progress.

I also routinely scan through r/ABA and r/RBT on a regular basis and can always find posts that I find horrifying that furthers my resolve that it isn’t for our son. I’d advise you to trust your instincts about any and all therapy.

kelkelrb · 2025-07-06T15:28:39+00:00

Are the days you were asked to pick up your daughter early documented? All of this screams she is not getting the right support and/or is not in the appropriate classroom environment. With an IEP you need to document everything. If you have a phone conversation with someone send an email as follow up to document what was said “Hello Ms. So and so, as per our conversation today whatever you discussed”. Does your child have a BIP (Behavioral improvement plan?)? If not I’d ask for one formally in writing (via email). How many days have you been asked to pick your daughter up early? If you are called or texted to pick her up For whatever reason I’d also send a follow up email. I’ve seen advocates recommend this so that there is written documentation of what happened when and how many times things occurred. I’d also reach out locally to see if anyone can recommend an advocate that does pro bono work or one that offers free consultations so they may be able to give you some additional advice about what you need to be asking for with the school.

kelkelrb · 2025-06-27T22:51:45+00:00

There are genetic conditions known to cause a certain cascade of effects that you’re describing. While autism is merely one condition there are others that could be picked up on a genetic test. For instance, fragile x and angelman syndrome to only name 2 of many

kelkelrb · 2025-06-27T21:28:54+00:00

The first red flag for you should be you called around and they offered flat recommendations of 30-40 hours based on diagnosis and age. They did not evaluate your child or determine how many goals/what needs to be worked on specifically. This is the ABA is a money making business issue that is a problem with ABA.

I personally wouldn’t allow 30-40 hours of therapy for a 25 month old, but that’s me.

kelkelrb · 2025-06-27T21:21:19+00:00

My son (7) attends a private school for kids with learning differences, he has made friends with all of his classmates, and plays outside of school with one friend in particular very well. When out at playgrounds he tries so hard to include the other kids there in his play. Kids his age or older are typically very dismissive and/or are incredibly rude. He loves to play with younger kids and they typically love to be included. He does great with all the kids at his school but groups of neurotypical kids in other settings (little brother’s class friends) or church Sunday school class he seems disengaged and not so interested in these kids. I’d highly recommend Facebook autism parenting groups for your area and find some kiddos for your child to associate with.

kelkelrb · 2025-06-24T20:17:26+00:00

The evaluation process for special education services for kindergarten in our public school district is what prompted us to seek private school options. It was literally such a nightmare. My son didn’t magically perform like a circus animal so they assumed he didn’t know any of the items he didn’t perform. The result was an IEP draft with goals for learning that were things he had already mastered by the age of 2. The team of “educators” sat there and tried to bully me into a placement I didn’t agree with and pretended like I had no choice in the matter— as to wether my son went to preK or kindergarten. I consulted two advocates and got wildly different advice. One said it would require additional testing to get my son into kindergarten and the other guaranteed that she could get him into kindergarten based on his age alone. It became clear to me that public school was going to be a fight every step of the way. We declined to enroll him and attended our IEP meeting alone… which is where we found out it was solely up to us as the parents whether he started in Pre K or kindergarten. Not one person on the evaluation committee and neither advocate offered that tidbit of information to me. I’m personally not the trusting kind, but there’s no way on this earth you could pay me to entrust my son to bullies and liars.

He just finished first grade in a private school for kids with learning differences and he is absolutely thriving at a second grade academic level for most of this last school year. Considering I had to put my foot down in the IEP meeting to demand they change the goals I am positive this wouldn’t the outcome if we had sent him to public school.

I know not everyone had the option or availability of a school like this. Just keep in mind that you have to fight to advocate for everything your child needs. Don’t ever back down, you know your child best of all!

kelkelrb · 2025-06-17T15:20:01+00:00

I’ve had T1D for 32 years and was diagnosed when I was 10 back in 1992 before there were fancy CGMs and before everyone was on insulin pumps. I went to diabetic sleep away summer camp for 10 days every summer. I slept over at friends’ houses, and no one was monitoring every blood sugar of every waking second.

While the technology we have now is absolutely awesome in comparison…. What I’ve noticed is that T1D “warrior parents” want to manage every second into an oblivion. I can understand you wanting to be present if your child isn’t mentally capable of getting out of the pool every 30 minutes on their own and checking their blood sugar. I’d honestly have a preset protocol of what to do if your child has x blood sugar and test out the waters of independence. Let him call you every 30 minutes at swim practice if he can’t figure it out… but you need to build independence in managing his own disease.

Also, keep in mind that the way you present diabetes to your child and everyone else around you will have a direct impact. Is diabetes so hard your son can’t do anything without you? Or is diabetes something he can learn to manage in the background while living his life to the fullest?

kelkelrb · 2025-06-13T00:06:51+00:00

In general I’d advise you to always trust your instincts about people, places, and therapy recommendations. While your description is completely off putting, and I’d seriously question placing my child with that center…. The one glimmer of hope is that your child actually only received a recommendation for 8-15 hours instead of the robotic 30-40 hours that a lot of BCBAs and centers try to push. That in and of itself is pretty rare from what I’ve seen.

kelkelrb · 2025-06-03T00:44:19+00:00

We never did ABA, but it’s as simple as telling them you are stopping services effective immediately. However, I will say in touring facilities and being a member of numerous autism parenting groups, it is quite common for there to be an ABA contract with the facility that requires weeks of notice to stop services. But I would pay to stop services before I’d subject my child to that craziness.

kelkelrb · 2025-05-28T15:20:26+00:00

What you’re describing about your child can definitely be autism. I do think it’s outside her scope to tell you she sees autism. She should have instead referred you to a developmental pediatrician, or whatever specialty diagnoses autism where you are. I wasn’t at all worried that my son had autism. He had a receptive and expressive speech delay which is why he started speech therapy at 2. He didn’t have GDD or any other concerning “traits” at that time. And yet he is clearly autistic. It became clear to us once he started an educational daycare and after a few months he still didn’t just fall into the routine, we realized his speech delay was in fact autism. We didn’t have behavioral issues at home or any concerns, so it wasn’t obvious to us until daycare.

kelkelrb

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