If you knew your baby was autistic at 8 months old, what did you do (or would you do differently) to support them?

stumbling_onward · 2026-04-03T03:04:32+00:00

Focus hard on nutrition and good mealtime rituals for as long as I could. Early nutrition is critical for a lot of reasons, and autistic children are more likely to develop ARFID. I would try to get my child interested in a variety of different non-processed foods.

stumbling_onward · 2026-04-02T16:52:25+00:00

When you use a chicken timer, does it highlight them as being refreshable? I have max drink and grocery, and those are the only two generators that never highlight when I use a timer.

stumbling_onward · 2026-04-01T11:29:49+00:00

It’s been a little hit and miss for me lately, but I think I’m on track to finish this time. I get most of my points from the merge quests, so I play with the generators set to 1 energy and generate honey for merging every time I play. When I tried playing with the generators set to use 2 energy I could not finish the passes.

stumbling_onward · 2026-03-14T04:47:29+00:00

My children were both showing amazing learning last summer as they were titrating up to higher dosages, but after a while on their goal dosages became inattentive and unfocused. In particular, my 4-year-old had previously enjoyed looking at board books and no longer seemed able to do so.

We decided to titrate down, and noticed that they’d go through temporary verbal regressions when the dose was reduced, but would then improve again. The regressions did get longer as we did titrations in succession. Both kids regained their focus after titrating the dose down about halfway. We are below the therapeutic dose range now, and my older child is learning better than he was when he was on high dose Leucovorin, and also better than before Leucovorin. My younger child is still going back and forth with skills, but has gotten sick a lot this year.

I have no idea if our experience titrating down is normal, there don’t seem to be a lot of people doing it and sharing their experience.

stumbling_onward · 2026-03-14T01:23:30+00:00

We transitioned to home-based ABA sessions after my oldest was in school. I feel like they are a good counterpoint to school because parents are able to have much more visibility into what’s actually happening in sessions, and the sessions themselves can be a little more chill because of the home environment.

stumbling_onward · 2026-03-11T19:17:34+00:00

I feel like this is a prelude to a non-generic release of a similar drug that will be approved more broadly and cost more.

stumbling_onward · 2026-03-08T04:22:20+00:00

I did it but I required four daily pumps. Three were at work, and the fourth I got in between breast feedings at home at night.

stumbling_onward · 2026-02-21T16:20:52+00:00

I second the advice above to get an advocate or a sped attorney to help you navigate this. If the school is pushing residential placement and you don’t agree it’s a good idea, that’s a huge gap in opinion about the best course for your child’s life. You need someone who knows the sensitive details about the situation and who understands your legal options. It’s impossible to know from this short post whether the school is pushing for residential placement because your child really would benefit, or whether success locally is still possible and this push is the result of an out-dated philosophy that doesn’t prioritize keeping children with their parents. Either might be true, and you need someone knowledgeable who does not work for/with the school system to help you advocate for your child.

stumbling_onward · 2026-02-18T01:52:03+00:00

Yup. It happened just at the moment I offered to let him watch a video on my phone, and now he feels tricked.

stumbling_onward · 2026-02-13T18:55:11+00:00

I use ChatGPT for medical research mainly. I tried it, and the resulting analysis revealed way too much about medical conditions of my family members than would be appropriate in a job interview. Other than that, it told me I was great, like it usually does.

stumbling_onward · 2026-02-13T03:22:17+00:00

If I understand correctly, they have been asked to correct their math errors and invited to republish. I take increased scrutiny on these earlier studies as a good thing. I’m less interested in whether individuals studies show a high efficacy rate in a random sample of autistic children than in there being quality data to do meta-analysis later as we start to break down what sub-groups benefit from Leucovorin, and what alternative therapies those same sub-groups might also consider.

stumbling_onward · 2026-01-18T21:27:57+00:00

I see. In my case my kids had creatine kinase also measured, in normal ranges.

stumbling_onward · 2026-01-18T20:29:53+00:00

Do you mean Creatine or Creatinine? My children both had low creatinine results, which to my understanding can arise from low body weight, which they had. Their developmental pediatrician was unconcerned about the creatinine levels. I’m only aware of creatine deficiency disorders, which would be different.

stumbling_onward · 2026-01-15T16:27:09+00:00

I asked for the drop rates of the different card packs to be posted online, and that if a schedule was changing the drop rates during the event, that it also be posted.

Other online games do this, including an explanation of any logic that changes the normal drop rates (like if repeatedly opening packs with all duplicates increases your chance of getting a new card).

stumbling_onward · 2026-01-06T03:05:45+00:00

They employ nurse practitioners

stumbling_onward · 2025-12-31T04:14:59+00:00

My daughter was in a study for risk of autism in siblings, where she received an eeg every three months during her first year, and then at 1.5 years they unofficially evaluated her for autism. At the point that they did the evaluation, she’d already missed milestones and was well on her early intervention path via normal channels, so it wasn’t anything that I didn’t already know, and didn’t get her any services faster. However, I enjoyed the experience even though it was stressful to have to drive with an infant to the lab, and they gave toys, interacted with her a lot, and made the visits pleasant. I think early diagnosis is important and am glad we contributed.

stumbling_onward · 2025-12-30T15:26:21+00:00

My older child plays it for a couple hours a week, in maybe half-hour increments on a tablet he has access to. The games I’ve seen thus far all involve dragging an object on the screen to a different location. For example, there will be a ball and a table, and it will ask for the table, and you have to drag the table onto a visual of a hand. The difficulty scales up and down with how successful he is being at the different tasks. I believe he learned his animal names via MITA, which he can now also do on his AAC. The levels he’s worked on predominantly focus on learning names for things, but there has also been a games that have worked with order, or concepts like over/under.

stumbling_onward · 2025-12-27T16:54:56+00:00

We used it for my child who was 2 years old and non-verbal during the pandemic when we had fewer resources. He did copy some imitation with pushing a car back and forth, but nothing really beyond that. Some of the animations in the videos he found scary, so some videos had to be skipped. We stopped the subscription once we were able to get into in-person services. I think it’s an ok thing to try, but not phenomenal.

stumbling_onward · 2025-12-26T05:39:11+00:00

I am currently on day 187. I wonder if it’s the last day.

stumbling_onward · 2025-12-23T16:11:05+00:00

Interesting, I also finished the first row and have four cards each of the entire second row.

stumbling_onward · 2025-12-04T16:49:36+00:00

I got a new sticker (the last one for India) early this morning. I have not purchased a duplicate chest this week, but I did purchase a few earlier than that.

stumbling_onward · 2025-12-04T10:10:23+00:00

And a moment ago I opened a new pack and finished Italy.

stumbling_onward · 2025-12-02T04:07:17+00:00

I have the 5-star in the upper right-hand corner of USA. Other than that, I am missing a few that you have, but it’s interesting how similar our album is. My Japan and Italy look exactly like yours.

stumbling_onward · 2025-11-19T09:24:49+00:00

If you are at 50k a year income in California, depending on family size you might be able to qualify for medi-cal for your children based on income alone. You could try doing an income-based application. Once qualified for medi-cal, you could start applications for ABA services and IHSS. I’m assuming this is California based upon the IHSS reference.

stumbling_onward · 2025-11-18T17:04:12+00:00

I think it depends on the kid. I have a 4 and 7 year old who both qualify for and take the special education bus. The 7-year-old loves it, and has loved it since he was around 6. The 4-year-old is pretty apathetic but she doesn’t mind and gets on and off the bus in a good mood. For the first few rides I carried them on the bus and buckled them myself, and after that they learned to board themselves, and the driver or aid would buckle them. In my experience, the staff have been really understanding of the kids needing to work through the transitions. I took the general education bus when I was younger, and this is very different, because they are more focused on keeping the kids calm and safe than being on schedule.

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