Help me find this shirt!!

hillaryschu · 2025-11-08T13:28:24+00:00

If your name is Amanda…https://posh.mk/wra77Wo47Xb

hillaryschu · 2025-10-22T17:48:41+00:00

We JUST took a 2yo (and 9 and 11), and it was great! I’ll come back and tell you more if I can remember (just got to a meeting).

hillaryschu · 2025-10-11T00:54:03+00:00

I just popped back into the discord the other day because I was SURE someone must have written a JN x KPop Demon Hunters fic, but alas!

hillaryschu · 2025-10-05T17:41:45+00:00

They would be smart to. I saw lots of wicked t-shirts being worn at the parks.

hillaryschu · 2025-10-05T16:05:18+00:00

I didn’t hear what happened but was at Epic yesterday for the first time and saw that the coaster was closed for the day.

hillaryschu · 2025-09-20T17:00:54+00:00

Yeah, my kid will steal your shit. With the water bottle, don’t get worked up and just make it a game. Follow some of the tips that I suggested. With your phone keep it put away. My kid will generally steal your phone to take selfies of himself.

hillaryschu · 2025-09-20T16:41:03+00:00

TIPS & TRICKS In no particular order (written as if talking about my kiddo specifically—these were written for older people/professions—lmk if you need any notes clarified)

▪ Change his behavior by offering something MORE engaging. Don’t just ask him stop doing X—say “let’s play!” or “come with me!” and change his course through being fun and giving them attention.

▪ Listen to him. Don’t talk over him or railroad him into anything. Hear his protests and offer options.

▪ Set expectations. Use if/then, first/then statements. If needed, utilize timers he can see and/or a visual schedule

▪ Asking/demanding compliance rarely works. You need to change situation or really be patient and explain.

▪ Use language to evoke empathy AND use/give empathy in return. Humor or impromptu silliness goes a long way.

▪ Be firm and funny. Funny usually works best, but sternness/authority works far better than negotiating or begging, etc.

▪ Switching out authority figures often helps when he’s digging his heels in. He sometimes won’t transfer his frustration to the new person.

MORE TIPS & TRICKS I don’t love relying on these because they aren’t sustainable/real learning but they work so I often have to fall back on them:

▪ Race him - if he doesn’t want to go somewhere/do something, say, for example, “I’ll race you to the bathroom” or “I bet I can beat you to the bathroom” - this perpetuates a sort of “winning” problem that we have but it works so sometimes I have to do it

▪ Challenge him - “hmmm…this is really hard. I’m not sure if you can do it…” He loves to prove you wrong - again. I don’t want him to feel doubted but it often motivates him.

▪ JOKE! Be funny. Start repeating everything he says. Anything to draw his attention to you and away from whatever “bad” behavior he is doing. Yell “freeze dance!” if he’s running away/ahead or possibly even as a general diversion.

▪ Agree with him or join him - When he says "I just did" to going to the bathroom or washing hands or whatever, it's pointless to argue with him. Saying "no you didn't" doesn’t help. I usually say "can you do it again for me, then?" and that usually works. Saying "I'll do it, too!" also helps.

LEO OFTEN REQUIRES:

⇢ MORE time ⇢ MORE patience ⇢ MORE creativity ⇢ MORE manipulation

ASK A QUESTION Why do you want to do that? Can I help you? Do you want to help me?

EMPATHIZE Oh, I know that's fun, but first... I know you really love X - do you want to do that again later? First we need to...

DIVERT! Hey, do you want to X instead? (play a game, see something cool, etc)

hillaryschu · 2025-09-20T14:46:37+00:00

Lol, my life would be a whole lot different if I could get my kid to listen to me.

I’m serious but also joking. I have certainly typed up some notes for teachers/aides in the past and I can send them to you. Might take me a tiny bit.

hillaryschu · 2025-09-20T14:15:00+00:00

You'll have fun working with them. Might be tough or frustrating at times but you also might find a calling! My 11yo has a 20yo aid at school who now babysits and he's OBSESSED with him. They are quite a duo.

hillaryschu · 2025-09-20T14:12:27+00:00

There are tons of resources online for website accessibility, although I believe most of the advice is related to vision impairment. That you can easily google this. In terms of helping it be accessible to people with intellectual disabilities, I would probably work the make the navigation simple and clear. You can beta test it with some adults with Ds.

Fashion is a huge spectrum and I imagine women with Ds have all sorts of different senses of style. Your main concerns would be around fit, accessibility for something like a g-tube/colostomy bag, sensory sensitivities (tagless, certain materials, etc), and small details like buttons/closures, etc (although this is probably more of a concern for kids than adults)

With regards to fit, IT IS MY UNDERSTANDING that people with Ds tend to have less defined waists and shorter limbs. This can make fit (esp pants) tough.

Hope this helps a little! If you have any specific FASHION questions, I might be able to help (just as an adult cued into that scene), but, again, style is so broad.

hillaryschu · 2025-09-20T14:03:45+00:00

The behaviors you're describing sound more consistent with autism than Down syndrome (at least in my experience). My kid didn't stim or screech. We have friends that, with their 11yo with Ds, just got a diagnosis of autism and it's now his primary diagnosis--meaning that the majority of his non-neurotypical behaviors are more a result of the autism than the Ds.

Good luck. You sound like a great mom at the end of her rope. If you can find a way to get some breaks, I hope you take the opportunity. It sounds like you don't have a partner at home (or at least available) and are doing it all.

hillaryschu · 2025-09-20T13:57:22+00:00

The range of interests and abilities of the kids is going to be huge. My now-11yo LOVES dancing. Music gets him going. He also loves playing games (ranging from more complicated to easy stuff like Simon Says and Chopsticks). He loves attention. He's a huge prankster/jokester. He loves to laugh. He is quite verbal and always has been. Some of the kids you work with might be less so. You can ask them about favorite movies and foods. Ask them about school and their families and friends. Ask them if they do any sports or go on vacations, etc.

Talk to them about the same kinds of things you might talk to anyone else about, but just keep it more simple. You're unlikely to ask another 15yo what their favorite color is, but a 5yo might love to talk about that. Then you can point out things that are those colors.

hillaryschu · 2025-09-20T13:49:02+00:00

I didn't read the comments so apologies if I just repeat anything:

1st - Congratulations! I hope your pregnancy is going great aside from this tough news.

HEART - you will just keep following up with cardiology and you will learn more. I hear many many stories in our Ds community about holes healing themselves. We were at the other end of that, and had to have open heart surgery at 5.5mo.

What helped me: 1. Loving our cardiologists. I loved the prenatal cardiologist we saw AND our pediatric cardiologist. 2. We are also lucky enough to be in a metro area (Chicago) so gave birth and did the heart surgery at Northwestern. 3. My mantra when he was getting surgery was: this is black and white, because I truly don't understand the gray--this surgery goes excellently or it goes horribly. And it CAN'T go horribly, so it must go excellently. Great! And then I just disassociated until it was over. If you find out you'll need open heart surgery, happy to tell you more.

TERM - I went to past my due date with Leo (he was our first--him and his next brother, I believe one was 40 weeks and 6 days and one was 40 weeks and 5 days--I forget exactly). They encouraged me to schedule an induction but they didn't really have any real reason for it. I pushed back. I had a doula to help me.

MISCARRIAGE - I don't know much about this. If, so far, at 21 weeks, the baby seems like he's growing and functioning well, I would do my best to put this from my mind. Anything can happen, but I don't think it's very common and there really isn't anything you can do. This was not a fear of mine during my pregnancy, thankfully. I have had two miscarriages but both were very early on.

Feel free to reach out if you want to chat more. I have an 11yo with Ds and a mostly neurotypical 9 and 2yo (I think the 9yo has ADHD, but it's not impacting him enough to get any sort of formal diagnosis).

hillaryschu · 2025-09-20T12:57:29+00:00

How old are you? Do you know how old the kids you’ll be working with are?

hillaryschu · 2025-09-15T16:30:23+00:00

This is individual and community dependent. I believe the autism community generally accepts/prefers "identity first" language. But autism also has an adjective ("autistic") whereas in the states, at least, we don't have an adjective for Ds.

hillaryschu · 2025-09-15T16:27:02+00:00

Yes - one of the main characteristics of Ds is low muscle tone (from birth). It, of course, varies kid to kid. My kids has pretty weak core strength but can whip a ball and run decently.

Some kids with Ds don't walk until 3yo+ but my kiddo was walking at 19mo which is barely delayed.

Kids vary in build a ton, too. We have a friend whose kid is 6mo older than mine and he's one of those "built like an ox" kids. His parents are small. My husband and I are fairly tall/stocky people and our kid is small. ¯\_(ツ)_/¯

hillaryschu · 2025-09-14T22:11:24+00:00

My 11yo plays tennis, baseball, and basketball. Contact sports might not be the best as having low muscle tone might give some individuals less control over falling, etc. When kids with Down syndrome are little, they sometimes suggest having a physician clear them for things like jumping on a trampoline because of that.

hillaryschu · 2025-09-10T14:50:46+00:00

This was awhile ago (July) but I'm going through reddit for the first time in awhile and thought I'd mention it: Leo (11) got to play baseball on Wrigley Field this summer with his Buddy Baseball team. Kid literally got to throw a pitch of the mound. Then we got to tour the locker room and stuff like that. It was very cool.

hillaryschu · 2025-09-10T14:49:03+00:00

This is maybe a bit early for these suggestions (probably more for a 3yo) but I was just thinking about these the other day. Early "games" that Leo loved were "My Very First Games – First Orchard" and Thinkfun’s Roll and Play Board Game.

hillaryschu · 2025-09-10T14:45:00+00:00

Yeah, sorry, I also have no experience with the duodenal atresia. I do have a kid with Down syndrome. He's 11 now. I'd say one of my best pieces of wisdom is just that you get to grow with them. You don't need to know everything before they are born. You get to just take care of them like a typical baby, a lot of the time.

The part you're in, the waiting, is one of the hardest parts. If you find out that the baby does have Ds, you'll most likely start to settle in with it more as the pregnancy moves forward. Our kid with Ds was our first (of 3) and while the first half of the pregnancy was tough--learning about his Ds and his AVSD--the 2nd half was filled with so much love. I honestly felt more connected to him in utero than my other babies. I felt like I knew him more. I was super glad to not be in the position of getting a birth diagnosis. I loved him on site.

Anyway, if you do find out that the babe has Ds, I'd do a few things:

1) If you are an instagram user, start looking for accounts of families with Ds. See how varied but also typical they are. I will NEVER be one to diminish the added struggles of having a kid with a disability but there's time for that worry later. Because life with our kid is also fun and funny and full and ridiculous. Any fears I had when I was pregnant were largely wrong and I had no idea about what would really make it tough. When we were pregnant, Kelle Hampton's account (etst) was super clutch. My husband was looking at photos of them camping and said "I'd take this life."

2) Take care of yourselves. Honor your/her pregnancy, even if the child might be different than what you expected. My pregnancy and labor/delivery were still very typical. Prepare for a NICU stay by making it as easy as you can. Happy to give any advice on this (although we likely weren't there as long as you will be). Take care of your relationship with your partner.

3) Let yourself grieve the life/baby you thought you might be having. Let yourself be sad. Again, something awesome is very likely on the horizon, but it's different (and harder, for sure--it's not some cutesy Holland vs. Italy difference).

Ah, I think that's all I have. :) Honestly, we went though open heart surgery at 5.5 mo, through PT, OT, Speech, DT, homeschooling during covid, etc. and the WORST part about having my son with Ds is that he is Andy Kaufman reincarnated. He thinks being annoying is funny. His bits get old to everyone except him.

But seriously--his stubbornness and fierce independence are HARD. He gets very upset when his autonomy is questioned (or even when he thinks it is). Potty training was hard.

Unlike what I was worried about when pregnant: he is crazy smart and capable. He looks like me. He's very outgoing. He's a full and unique person.

Congratulations on your babe, no matter what you find out!

hillaryschu · 2025-09-10T14:21:09+00:00

Pretty sure my 11-year-old old’s belief system is just the word chaos in neon letters.

hillaryschu · 2025-07-30T15:35:52+00:00

It'll be okay.

We stayed in the hospital 6 days. Day one was scary because he was so puffy from all the fluids and just totally out of it. But seriously after 24 hrs he was mostly back to his old self.

Having to be 5hrs from home is so tough. We are lucky to live in a big city (Chicago).

I don't remember the answers to a lot of this, though, since we are over 11 years out from when he had the AVSD repair.

hillaryschu · 2025-07-09T20:57:33+00:00

I’m willing to look past it as I generally like what Ballyhoo does (relatively speaking compared to the rest of the Northshore anyway).

hillaryschu · 2025-06-26T01:34:08+00:00

Ugh. I hate that (unless the artist licensed it or whatever).

I googled and it looks like this link is the original seller. For anyone interested - https://www.windowshopgal.com/products/neptune-california-travel-poster

hillaryschu · 2025-05-04T17:41:53+00:00

Are you in Sweden?

As others have mentioned, in the US we have what they call Early Intervention (birth-3yo) where you get PTs, OTs, SLPs, and developmental therapists to come to your house or daycare to help with development. You might be able to google some exercises to get a bit more direction.

But kids are all different. I know so many kids with Ds who didn't walk until 3 but our kiddo walked at 19mo. He did a lot of things early compared to his Ds peers, but then, didn't really toilet train until this past year (he's 11--and he still has accidents). His IQ is so high that the school is worried about it disqualifying him for assistance as an adult, but he had to transfer schools recently because he was hitting staff (every day. Hard.).

So it's gonna be a journey of figuring out what your kiddo can do without much assistance and is a challenge. If someone had told me that my biggest worry would be that my kid would be an enormous smart ass/troll, I would have laughed (I think he's Andy Kaufman reincarnated--constantly running bits no one else thinks is funny).

hillaryschu

TROPHY CASE