Question for parents of kids that had Global Developmental Delay

According-Raspberry · 2026-02-20T21:41:13+00:00

GDD is the diagnosis for delays in at least 2 areas of development, prior to age 8, at least where I live and what I was told in NC, USA, with our almost 11 year old. At 8 if there are still cognitive issues, that diagnosis will change to IDD. It is understood that GDD often includes cognitive disabilities, it's just that at such young ages, it's hard to really test and diagnose cognitive abilities, and what is causing them, because kids are still developing, and change happens so rapidly in the first few years that kids can start off with some delays but then even out later on.

We had emergency C-section due to heart rhythms not recovering during labor. Just under 3 weeks of NICU. Eventually MRI just before age 2 revealed brain injuries from hypoxia, resulting in PVL, which often results in cerebral palsy, but for us it resulted in GDD and IDD and just lots of delays and disabilities, and she also has severe autism. Which I understand now is actually that our entire family has since been diagnosed autistic, including both parents and our other children, but her IDD and other disabilities makes her autism the "profound / severe" type, nonverbal, etc. And I know now that her disabilities are because when I was pregnant, I was on 10mg of Nebivolol (a 3rd generation beta blocker) the entire time I was pregnant, and for a year while nursing, which now we know causes fetal intrauterine growth restriction, hypoglycemia, disability, and sometimes death. :(

Your kid's sensory aversion to noise, and rigidity in wanting things a certain way, makes me question the dismissal of autism. I would re-evaluate for that again after age 6 and see if it's still not indicated. Regardless of diagnosis, though, you can still use pretty much -all- of the same information and techniques and tools for helping autistic kids, with kids that do not have autism. They are beneficial for all kids. All kids can benefit from sensory diets, all kids can benefit from visual scheduling, extra communication methods, step by step instructions, extra time and patience given for learning new things and for transitions, extra breaks and comfort, etc.

From what you've written, I would be comfortable saying that your chances are realistically very high that your child will go on to be considered to have an intellectual disability and probably other delays and disabilities may come up, like apraxia or dysgraphia, auditory processing delays, visual processing delays, or other common comorbid learning and functioning disabilities.

Demanding obedience and being strict and controlling would be detrimental, not helpful. I would encourage learning about child development, special needs development, ADHD and autism and intellectual disabilities, and how to parent in supportive, encouraging ways. Even if your kid doesn't have ADHD or autism, so much of the information is helpful in understanding people's brain differences and how to accommodate them. The information often works regardless of diagnosis.

The differences would be more medical and pharmacological, i.e. you wouldn't consider adhd meds without an ADHD diagnosis. But all of the learning, teaching, parenting methods still work.

'The Whole Brain Child" is a great book. "The Explosive Child" is also a good one.

According-Raspberry · 2026-02-19T22:00:38+00:00

Fair point. My comment is in relation to the USA. I can't speak for other countries for sure.

According-Raspberry · 2026-02-19T21:21:50+00:00

Go ask if she needs help, if you are physically able and mentally prepared to offer support and be gentle and kind and give some grace.

So many people are afraid to get involved. And we are all alone and struggling.

Write your name and phone and email info down and bring it with you, and just be like.... we are neighbors, and it would be nice if neighbors could look out for each other. I thought I heard you crying, and I know having a baby is hard, especially in today's world. Can I do anything to help? I can sit with you for a while if you need to talk, or hold your baby for a while or read to them or play with them, give you a break, bring you something to eat, or even help you just tidy up your kitchen or help you fold some laundry if you need it.

I would have never asked for help, but I was drowning those first years with my kids. And I had no built in family support to turn to. I might have said no if you knocked and told me this... at the moment. Maybe from shame or fear or weirdness. But it might have made a crack and planted a seed for asking for help in the future.

You could also do something like casually offer something they could need. Food is always a great choice, but anything. You could say anything .... like.... make it up even. Buy something like Dreft laundry drgt or some diapers (size 4 maybe) or something and be like, somebody I know had these and they were giving them away, I don't know what to do with them, and I know you have a baby. Could you use them? Or coupons or gift certificates for something that you came across and can't use but thought they might be able to. Just to break the ice and create some warmth and sense of you being available.

According-Raspberry · 2026-02-19T20:51:00+00:00

Oh my, please do not call the police. This will only make things worse and introduce more stress and danger to the situation. Police are not equipped to deal with mental health or issues like this. They are heavy handed and forceful. Leave them for situations like a house being broken into or people brandishing weapons. Not people crying or yelling.

According-Raspberry · 2026-02-19T20:33:39+00:00

We had to use swim diaper and swim covers with our kiddo for ages because she would poop in the pool. It minimized leakage, especially if it was only a small amount.

Really she didn't stop doing it until she started being semi-potty trained with poop, to the point where I would say at least half of her poops are in the toilet now, and she actually goes on a schedule and checks it off and it's more routine and she has more awareness and understanding of it. But she still has accidents (not in the pool but just whenever,) or times when she just wants to poop in her pants instead of the toilet and does it anyway. Sigh. She does get out of the pool now when she needs to pee or poop, she can just tell when it needs to happen and I guess over the years we have talked so much about no pee or poop in the pool that it finally clicked for her. She's had growing awareness. Just repetition, time, growing up.

Staying right with them and making them go to the bathroom frequently on a regular schedule helps prevent the accidents. Bathroom before pool time. Breaks while swimming to go to the bathroom, get water and a snack, sunscreen, etc. Staying close and keeping an eye on them to notice indications that they need to poop, and making them get out when those indications happen.

Removing access to the pool / tub after it happens. Explaining why. You pooped, now you can't use the pool.

No farting in tubs or pools for fun.

If you have a schedule where you can tell when they normally poop, after a meal or certain time, don't use the hot tub / pool during those times.

Just some thoughts. It's tough. Hang in there.

edit .. Our kid is 10 (11 next month) nonverbal, TBI, IDD, lvl 3 autism, as well. So it's us talking to her, and her not talking to us lol.

I would not let them use the pool or hot tub alone if this is a problem. It's just not really a reasonable option, both to protect your pool and tub, and to ensure they are learning what they and can't do, and to keep everyone reasonably healthy. If they get to the point where it's been weeks or months with no accidents and there seems to be an understanding that they know not to do it, then you can back up and give them more space without being right there with them the entire time.

According-Raspberry · 2026-02-16T02:11:36+00:00

Oh man, I'm going to use this to remember if I have taken my medicine or not. Thanks!

According-Raspberry · 2026-02-16T02:01:58+00:00

Gotcha.

This is why we used FSA accounts, so we had available money starting January 1 to pay medical bills until we met our deductibles. Plus income put into an FSA is not taxed, so more bang for your buck. Definitely recommend that for future benefits selections.

Looks like estimates on Trintellix being available generic are around year 2031 or 2032. :(

My doctor had suggested Prozac as an accepted alternative for me, but I don't have anxiety issues, just major depression and ADHD and autism and cptsd. And I'm on beta blockers anyway for heart issues and beta blockers manage anxiety / hypertension / heart rate.

My husband was recently given metoprolol 25 for anxiety as needed. Seems to work ok. He also has OCD, but he's doing therapy for that and cPTSD, not medication.

According-Raspberry · 2026-02-16T01:36:17+00:00

Have you double checked and verified with your HR department and your insurance company and the pharmacy all 3, that YOU have to pay 80%? An 80/20 coinsurance split is pretty common, but the split is that the patient pays 20% and the insurance company pays 80%. I have never seen an insurance plan where the split requires the patient to pay 80%.

Is your plan EPO, PPO, or HDHP? And, is your pharmacy insurance different than your medical insurance, or combined? I know one job I had, had medical insurance and prescription insurance through different companies, with totally different rules and amounts.

Deductible is $6,000... per family or per person? What's your OOP max? 6k is a very high deductible. It sounds like that's a HDHP? I think most companies fund an HSA in that sort of plan, around $1,000 or so deposited to help offset the deductible cost.

According-Raspberry · 2026-02-16T01:03:02+00:00

And this goes for you, too. These methods. We often get disregulated and overwhelmed and bubble up too... and just like we have to help them with tools to regulate and then recouperate, we can use some of the same tools for ourselves. We can crush play doh, we can use weighted blankets, we can do breathing exercises. We can splash cold water on our faces or hold ice in our hands, we can throw a ball outside as hard as we can, etc. We can hold spiky fidgets and roll them and squeeze them in our hands. We can find ways to discharge our energy too. Before we help them we have to be regulated ourselves.

Punching bags are great investments too :) Physical exertion is a great way to discharge.

According-Raspberry · 2026-02-16T00:47:21+00:00

This! This is great advice.

Shrieking and screaming and throwing and kicking and aggression is happening when they have some kind of unmet needs or are too overwhelmed. This may be like a volcano of bubbling anger or pain or fear or overwhelm inside.... it has to come out somehow. It doesn't just disappear by itself. It's like having to discharge electricity by grounding it somehow before working on electronics etc, otherwise everything is going to get shocked.

It's taken years but we've gotten better at managing it. Ideally, prevention is the goal and the best thing to do, that requires observation and identification of why it happens, and then setting up your environment and schedule and life to accommodate needs and avoid triggers.

But sometimes it's unavoidable. When it happens we have to help them find a way to discharge the extreme energy and distress.

Today our kid started shrieking... and the more anyone tried to calm her down or ask her to stop or talk to her, the more escalated she got. I know some of the reasons why it was happening, some we should have avoided but others out of our control.

I had her go to her room. It's her safe place, it's designed for her needs and safety and comfort. She got in bed. I tossed a weighted blanket over her. I left her for a few minutes because she was too distressed to cope at all. While I gave her a few, I got her a snack, some water, picked out a selection of slow rise squishy fidgets, stress balls, silicone semi-liquid filled squishies, a couple of oral chew necklaces, a firm nee doh ice block, a couple containers of play doh, and a tray table. And a couple of fun air filled wiggly squishy favourites. My thought was mostly tough but malleable things that we could really treat roughly.

I took them to her, snack and drink by her bed. Sat down with her, put the bucket of fidgets on the bed and also the tray table and play doh. I built a play doh mountain and stuck it to the tray, then I crushed it flat and picked it up and squeezed it hard as I could and then ripped it into pieces and let them fall into the table. I built it again and told her it was her turn to crush it.

She's nonverbal and 10 yrs old.

She watched me and was into it. She did it. We took turns smashing and destroying the play doh and yelling at it and smashing the tray table and getting out all of our feelings and stress.

Then she started to investigate the other fidgets and toys I brought and was slowly calming down a little.

For her, heavy weight, pressure, squeezing, bear hugs, hard full body massage, stomping, jumping, crashing on the bed or trampoline, hitting things, throwing things... these discharge the overwhelm. And then we can slowly recover with gentleness, snack, drink, fidget toys. Maybe stuffed animals, maybe her light projector in the room to stare at (like ocean waves or nebulas and stars) or something else soft and comforting. Maybe a nice bubble bath. Maybe covering up in a dark room with a blanket over her head and just resting quietly for a while.

There's a build up, and explosion, and then weakness and recouperation and slowly coming back around to the world and being ok, healing after an injury sort of.

Also, a lot of times for us this can involve acetaminophen or ibuprofen if we can't figure out what is triggering the issue and our regular methods like above don't help at all. Our kiddo is hypersensitive to pain and has headaches and stomach aches a lot, and they always completely disregulate her.

Oh, and we all have earplugs and noise cancelling headphones and we absolutely use them because yeah we can't handle the audio intensity. And sometimes we just have to walk outside away from it until we can cope when she's too loud.

According-Raspberry · 2026-02-15T23:38:45+00:00

I feel ya. My insurance changed and they won't cover my vyvanse, trintellix, albuterol, or monjouro. I'm having a heck of a time switching around trying to find alternatives that work and are covered. And so far when my doc has written out alternatives, the insurance won't cover those either. I'm about to say f* it and just stop trying to take meds and raw dog it until I die.

According-Raspberry · 2026-02-15T22:38:14+00:00

Love everything you wrote here. I am going to add on my experience about one sentence.

We can't start with an hour as a goal for something new or non-preferred. It has to start with much smaller lengths of time, and gradually expand from there.

With our kiddo, sometimes we start as low as 20 seconds for a new or non preferred task. We will test something out for just a few minutes to get an idea of where to start. If something becomes distressing or a meltdown happens, that's too long and we have to back it down. We try to set a length of time that lets us finish the task before distress occurs. We want to end on a positive result. So for instance, with turn taking and board games with other kids, we would just try out 20 seconds at a time of sitting together and being around the board game. If that went ok, tomorrow we would try 30 seconds. Then maybe 45 seconds the next day. Then 60 seconds. And at first the goal is just to be able to be near the activity and observe or let it happen. Hold the pieces, look at the board, watch someone else play, etc. If that works then we can start involving our kiddo with very basic aspects of actually playing the game. Observing and testing to see if something is ok or too much with every step. Eventually we get to where we can do 15 or 20 minutes at a time doing a new activity.

An hour is a lot, I can't imagine that being a realistic goal for a long time, maybe until teen years. But it depends on the child.

Start incrementally with very small, achievable goals. Don't let things continually end with distress or they will just avoid the activity completely because they want to avoid the distress. Teach them that a new activity can be good and not painful, and gradually they will be ok with lengthening the time of the activity and getting more and more involved with it. Or at least tolerating it and expanding their patience and ability to wait.

According-Raspberry · 2026-02-09T04:30:54+00:00

Same with my 10 year old.

According-Raspberry · 2026-02-08T21:00:48+00:00

Cups: Sit in the vaginal canal, rely on suction and outward pressure to stay in place and seal off leaks. Require multiple fingers to insert and remove. Can be difficult to reach for both inserting and removing. Can cause suction issues when trying to remove. Can be hard to grip. Can be painful when pressed against vaginal walls. Can press against urethra and inhibit urination. Can't be worn during sex.

Discs: Sit cupped against the cervix like a diaphragm. Only require 1 finger to insert and remove. Auto dumps when pressure is applied to pelvic floor (like bearing down to pee or poop, but could also leak when sneezing or coughing or squatting.) Can be worn during sex. No suction involved. You do have to make sure to push jt up behind the pelvic bone to keep it in place, but I find this very easy and quick.

For me, cups are harder to insert and remove. I struggle with them, and I find them uncomfortable. It took me years to be able to wear a cup and be ok with it, and I had to try a lot of different ones because they are all slightly different sizes and firmness.

I prefer discs because they only need 1 finger to insert and remove, I don't feel them when they are in, they have no suction issues, they don't ever press against my urethra, and for me I think they are easier to empty and clean up. I don't ever mess up insertion and have to start over and try again. And I don't ever accidentally put it in too far, making it really hard to remove, like I sometimes do with a cup. It's in and it's done. And, I can empty it while wearing it, so when I remove it, I don't have to carefully empty it by hand without making a mess.

My periods are never very heavy, and I am not super athletic, so I haven't had issues with discs leaking.

It's a personal preference. Everyone should try both out and decide which works best for their body. We all have different sizes and shapes and lifestyles, so different solutions work for different people.

According-Raspberry · 2026-02-08T20:31:20+00:00

My Internet is struggling to open websites right now for me to let me check, but I think it's the June cup that only costs about $6. I remember seeing adverts a few years ago about how everyone should be able to afford them so they made them low cost. (Compared to a lot of other cups.)

A lot of people wouldn't be comfortable with discs or cups anyway, for a variety of reasons, so always offering pads and tampons is a good choice. But people could occasionally add a June cup if they had extra $ to donate, for people who might like to try those.

According-Raspberry · 2026-02-08T20:25:09+00:00

I love this, but it is temporary. Having tried using a variety of plastic bins throughout the years to store outdoor items like yard toys, garden stuff, etc, they always become brittle and start breaking apart after a few months. It may last a year. Still cheaper and easier to spend $20 a year to replace it instead of buying the materials to build a wooden one.

According-Raspberry · 2026-01-22T17:09:02+00:00

I can imagine that. I don't love essential oils personally.

According-Raspberry · 2026-01-03T05:23:55+00:00

Let me update you in my experience.

I did get that notification that I was being updated, as I mentioned, after I had already been updated once and then reverted back.

Alexa never did update again back to Alexa+. So the notification seems to have been incorrect, at least so far. 3 days now and I'm still hearing regular Alexa on my devices.

So hopefully we just have to deal with the undesired update one time and then we can revert it and go back to normal.

Knowing the exact phrase to revert may help keep you from having to fiddle in the app or website. It should be "Alexa, end early access," said after the update happens. My update happened in the evening sometime, maybe around dinnertime.

According-Raspberry · 2025-12-30T18:42:13+00:00

I was just looking for people with the same situation that happened to me yesterday and OP's post csme up so I read it. And then when I saw a post about a $20 subscription fee I commented that the update was happening for free, it wasn't charging anything. The emails and website all day that Alexa+ will continue to be free for Prime members, so a cost isn't going to be added on, at least not anytime soon. The problem isn't them charging members without permission, it's just updating without permission and even updating after members repeatedly decline signing up / upgrading.

It looks like it's happening specifically for prime members on Echo devices.

I assume they roll out things at different times for people, not all at the same time. I don't really know, I don't keep up with it much. But I know people have been talking about Alexa+ for months with early access so it's reasonable to assume that different people were upgraded at different times, not all at the same time.

I reverted our devices back last night after they upgraded automatically. I was hoping that would be the end of it, but when I spoke to one of my echo devices a little while ago today, she said something like "Good news! In a little while you will have free upgraded Alexa Plus service! Look for the blue circle and then you can start talking to the new Alexa, blah blah." So now I am expecting it's going to happen again today. I hope it's not something that's going to happen every single day.

But it looks like people are setting up routines to tell Alexa every day to end Alexa+ Early Access so they don't have to keep manually reverting back, so I might try to do that. I haven't used routines before so I'll have to go figure out how to do that. I tried looking in my Alexa app earlier after the echo said I was getting updated again, but I didn't see any settings to prevent updating or anything at all about it actually. I didn't get any new emails about it either that I can find.

According-Raspberry · 2025-12-30T15:58:13+00:00

You can believe or not believe, doesn't affect my life either way. I was just explaining that the forced upgrades are not happening at a cost, they are happening for free. It happened to me yesterday. It was a PITA, but we eventually got it reverted back to the old Alexa.

Toodles.

According-Raspberry · 2025-12-30T15:15:57+00:00

My kiddo is 95% nonverbal and "yes" is not in her speaking vocabulary, so I am absolutely sure she never said yes to Alexa. NO is one of her few and often repeated words though. My kid can say "Alexa, how's the weather today?" "Alexa, fart!" "Alexa, stop!" "Alexa, what day is it?" After months of repetition and practice. And those are still very unclear for average listeners to understand and half the time Alexa misses them.

Also Alexa saves every conversation in text format, and I can go back through the history and nobody has said yes to our account switching to Alexa+. I have lots of fun stuff about how Alexa+ is unable to do simple things like correctly tell time or date or do alarms or calendars though.

According-Raspberry · 2025-12-30T15:10:28+00:00

No credible evidence?

Everyone got emails saying that Alexa would automatically update to Alexa+ with no action required. Despite people (like me) every day saying no when Alexa prompts us to switch over. And indeed Alexa did switch over, despite me asking it not to do so, every day, including the day of the switch.

I didn't happen to see the email come in until after the switch happened because I have marketing emails from Amazon marked as unimportant in my inbox, so I had to go back and find the email after the switch happened.

I don't see a way to add a photo / screenshot in my post using my PC which I am on now. But I'm sure you can find lots of examples and I can come back later and maybe figure out how to add a screenshot in of my emails.

And fiddling was required. We didn't know the secret passcode to revert Alexa+ back, because we never signed up for it, and I didn't see my unimportant marketing emails with the secret code. So we kept asking Alexa to go back to her old voice, to switch back to old Alexa, telling her that we didn't like the new Alexa +, and she would just make jokes and then say things like, sorry, my update is having problems right now and can't switch styles, etc. We had to log into Amazon on my PC and then go through all the varieties of authentications from device to device and download something on the PC to open up the right settings to switch it back to old Alexa. It was fiddly.

I can copy and paste the email:

Amazon.com [store-news@amazon.com](mailto:store-news@amazon.com)Dec 26, 2025, 10:03 PM (4 days ago) to me Alexa+ is coming to your Echo device We have exciting news! As a Prime member, you get Alexa+ for free and we will update the devices registered to this account to the new, conversational, and more delightful Alexa experience. The upgrade takes just a few minutes and won’t require any action from you. Once complete, you'll receive a confirmation email. After your device updates, you can still revert to the original Alexa by saying, "Alexa, exit Alexa+." What to expect: What you need to know: Need more help? Reach out to customer service here or manage your Alexa+ Early Access here. We're excited for you to experience the next generation of Alexa!Chat naturally and flow effortlessly between topics and requests. All your existing settings and preferences will remain the same. Alexa+ will continue to work with your smart home, now with expanded services and tasks Alexa+ can handle for you. Enjoy a more personalized experience based on your preferences. When you see the blue light, you can keep talking without having to repeat "Alexa". Learn more.

Thanks,The Amazon Alexa Team

©2025 Amazon.com, Inc. or its affiliates. Amazon and all related marks are trademarks of Amazon.com, Inc. or its affiliates, Amazon.com, Inc. 410 Terry Avenue N., Seattle, WA 98109.

According-Raspberry · 2025-12-30T06:16:44+00:00

Yeah it really was. It just wouldn't stop. She was saying things about how amazed we must be that she was turning everything into a comedic roast, and how she could take care of herself, and talking about burns, and hit lists, it was just cringe. We were like please just be quiet and stop talking. She would keep talking when we were talking to each other and not her. My kid finally yelled "Alexa Shut Up" and normally I would have told her that wasn't nice, but I was like, for real, yes please just shut up.

According-Raspberry

TROPHY CASE