Separated from the daddy back in july. Only 15 minutes away now and our little is 2. No major health concerns etc but there are delays and behavioural things going on. I am almost pleading and begging that he sets something up to be more regular and consistent in seeing her. He cant or wont commit to any day in the week and excuses himself with his irregular work pattern to which i understand but he wants me to just drop all plans and routines to accommodate him at short notice when i know he can at least give a few days grace. Because of this he will only spend time with her every other weekend and again even if he is not working friday or monday he will only be available for say a friday at 6pm and is determined she is back with me at 4 every sunday. And he is complaining that his every other 2 days no contact is his head space etc.

The problem is am faced with is little has major separation anxiety for 3 days after her return. Gets upset if he has demanded a FaceTime call as she cant understand why she cant have real contact and she lashes out at me after. I have tried explaining all of this as gently as possible and that she would greatly benefit from routine and consistency. I feel that even in spite of myself even if he could just accommodate 4 hours every Saturday or sunday it would be better for her rather than going 2 weeks without spending time with him.

I am flexible with it as long as i would know which day and if he needs a full weekend to himself every so often as that will allow me full weekends with her too for our own plans and fun things to do.

I know i cant force him too see our child and really wouldn’t even want to as that can put strain on the quality aspect of her time with him.

I guess what i would really like to know thoughts on any experiences / general knowledge etc for our precious kids? The impact of limited contact on her seems so different to what i have seen within ’typical’ settings.

Thanks for reading please be kind i just want whats best for our little

Does anyone here use TeachTown curriculum or have a child learning from it? I have concerns about the new TeachTown screen based curriculum that the school district does not seem to be taking seriously:

1. Numerous studies have shown that learning from a screen is not as effective for children as learning from tangible materials
2. The only two published studies done on TeachTown showed that it's not an effective curriculum; in fact in the largest study done, the students on TeachTown had worse language scores at the end of the year compared to the control group of students
3. TeachTown makes extremely lofty claims on their website such as: "After 1 year on TeachTown, 100% of students were able to push into gen ed for part of the day!" However when we requested to see their studies they refused to share them.
4. We reviewed one of their curriculums that's available to the public and it's terrible. It's riddled with grammatical errors and very confusing questions.

I’ve raised concerns multiple times now and I am dismissed, I am told that my concerns have been noted and that there's nothing to be done about this because it's the curriculum that the district selected. Please look into this as well if you have any concerns!

This is our first kid and we just found out she will be born with Down syndrome. We know its not the end of the world. I am just looking for advice and some guidance on what to expect when we bring her into this world?

He loves passing the ball to me and he loves playing with it and i just discovered this today! I love him he is so adorable! 🩷

Anyone have any tips for handling people around you that use the “r-word” as a casual part of their language? I work on a job site where there’s a lot of “guy talk” with the usual vulgar language, which also includes a few “r words”.

It feels weird to say something about it because I don’t want to be “that guy”. I’m trying my best to fit in with this group of guys (it’s construction) and I feel it would be off putting if I made a deal about it.

Before my son was born I never noticed it but l I’ve become more aware of it and get uncomfortable. I know I can’t control what people say or do but does anyone have any experiences dealing with this, with coworkers, friends, or just in public. I understand ignoring it, but if you’re in a situation where you can’t, what would you do?

Should I do nothing ?

Edit: I had a group of friends previously that made comments about my sons Down syndrome and I cut them off completely. I have no friends now so what do I do

Edit: it’s not all of them that say it, just the Foreman and he’s not making fun of people with special needs, he just uses the word.

His DS is fairly mild but he's barely literate and doesn't have any friends that half out with him after school or a dad to play with. He's about as mentally developed as a normal 10-12 year old but wants to be treated like a "big kid". Not into sports. I'd prefer not to buy him a video game or book (bought him one for Xmas). $30-100 budget. Thanks in advance.

Hi everyone,

We got a diagnosis of Down Syndrome for our baby girl yesterday, from amniocentesis results. I am 19 weeks pregnant.

So far, we had two early anatomy scans and she has had no ultrasound markers (heart has looked good, kidneys, bowels, etc. and normal NT fluid). We have another scan next week. Is it likely she would be generally healthy if nothing shows up on ultrasound? To those with loved ones with & without major health complications... Were these seen on ultrasound prenatally, or came up later in life?

Thanks all.

So yesterday we were hanging out at the park with some friends and their kids and we were talking about our 2 month old son and that he had down syndrome. My friends kid, 9, asked what was down syndrome. My wife and I word vommited and started trying to explain it. What do other parents say to young kids to simplify an explanation.

Our kiddo is 13 and works hard in her mainstream grade-4 classroom and during her four hours of daily ABA therapy. We see consistent progress in her language and social skills. We’re going to keep pushing her as hard and as far as we can, but, at this point, it looks like we should start planning for the situation where she won’t ever be fully independent.

We are US citizens who live outside of the US. We’re about to move to southeast Asia for four years, and we’ve already got the basics of her school, therapy, and day care set up. When we leave southeast Asia, she’ll be 17. We’re starting to really wonder: How does it go when your kid turns 18? 21? 26 (the health-insurance cut-off age)? And how does our plan to retire outside of the US fit with the goal of making sure our daughter, who will be an adult when we retire, has the right mixture of independence and care?

If you live in the US, I guess I’m asking: How long do we / can we / should we continue with more-or-less regular school, boosted with ABA/OT/ST/PT? Are US public school systems willing to have 20-year-old “super-duper seniors” in public school? What about after school is done?

If you’re not US-based, I’m interested in learning about programs, or facilities, or things-I’ve-never-heard-of-so-can’t-ask-about-them, for adults with special needs. What’s out there for us to look into? Are there any countries that stand-out with the available support for special-needs adults?

Thanks for any responses: info dumps, follow-on questions, yeah-me-too comments, and rants are all welcome!

Many are differently abled and there are a large proportion of participants who have Downs Syndrome. I have a very good idea I think but the plot doesn't mention disability at all. I just thought why not write a script that's a great story and not make an issue of the fact that all the young actors have a disability? But is that wrong to do? I want the actors to be part of a film that's just a great film....and not to always have to make an issue of their disabilities. Obviously I plan to discuss it with them but before I did that I thought I'd ask here.

I'm 42. My little brother, a year younger than I am, has Down Syndrome.

In 1983 when my little brother was born, the doctors asked my mother where she'd like him institutionalized.

That didn't sit well with my mother. My mother slapped the doctor and said she'd take him home with her.

My dad said, "Hold on... Wait... The doctor has a point, that might be a good idea." That's when the divorce started.

Dad said, ok, I'll take one kid and you take the other. This also didn't sit well with my mother, who fought for custody of us both.

Mom was highly abusive of me and my childhood antics. Discipline in the 80s by an Asian mother hits (literally) different, I guess. I have an older half-brother (different father, same mother) who reports similar physical abuse. His father took him, as my mother is fairly toxic.

As latchkey kids, I have many fond memories of my brother and I riding bikes around the neighborhood in the 80s to early 90s, horseplaying, and watching Nickelodeon together. In my mind, we had a very normal childhood.

When I became a rebellious preteen and began fighting back, along with school issues, dad got his wish. I was sent to live with dad and mom kept my little brother.

Fast forward thirty years. I have escaped the toxicity that is my father and had little to no contact with either of my parents.

I have a wife and four kids. Two teenage girls a preteen girl, and a ten yr old son. I'm not perfect and I try my best, especially with my son who likes to test boundaries.

I'm an electrical engineer and have my own house which I enjoy working on. My current projects include a driveway repaving (as I have two teenage drivers in the house in addition to my wife's and my own cars) and two renovated bathrooms for my teeange girls.

My mother is now close to 80 years old and has fallen down some stairs. She's undergone spinal surgery and might be able to feed herself and walk again with major physical therapy.

Due to her fall and me being the only other next of kin in the area, I was called in.

I live in Washington DC. Mom had retired to a small village in the middle of nowhere on the North Carolina border; four hours away. The population of this town is about 2,000. There's a pizza joint, a Hardees fast food restaurant, and little else.

I found my little brother in a hoarder house full of random crap with broken appliances and rotting food. For the past thirty years, my mother has been the sole caregiver of my little brother. He never had to walk. She delivered food to his bedroom and retrieved it. He had little social activity and now speaks very softly. In addition, with lack of physical activity, his heath has deteriorated.

I spent the past two weeks driving 4, 8, 12 hours a day... Back and forth... Arranging care for both my mother and brother.

I have decided that this is unsustainable and have brought my little brother up to my house in DC.

Now what...

I've got seven people in a five bedroom house with two functional bathrooms and in-progress construction projects. The house is a split-foyer and my little brother has mobility issues.

Additionally, I've had issues going through my mother's estate, financial, and legal paperwork. Completely disorganized and impossible to make sense of... Especially without power of attorney.

I have had several mental health breakdowns over this. I don't know what to do.

Help.

Hello everyone!

My uncle and his wife are expecting a girl with DS in the next two months. It will be the first time that we have someone with DS within our family and while we are all excited to welcome her, we are also figuring out how things will be.

I wanted to gift my uncle and his wife something that might help make things smoother when she comes along . Can anyone suggest any ideas? (I have a budget of 200-300 euros)

For some additional context: we are located in Spain and they have two kids already.

All help is much appreciated!

Daughter will soon be on her feet and I'm so proud of her! She has mild hypotonia and she's been working so hard to stand! PT didn't expect this achievement before at least 6 months and she proves her wrong!

Proud mom! 18 pounds, 2 feet 2 inches tall, sitting independently, and the light of my life!!!!

From the biggest accomplishment to the smallest moment, share a moment of celebration this week!

Please remember this is a thread to celebrate, not compare.

Yesterday my uncle saw her and asked the nurse to take their picture. The nurse was dancing to get my aunt to look. My aunt started laughing. God I missed seeing her laugh.

I love you Mary.

Hi. I work with biomedical research and I know, superficially, (it's not my area) that people with down syndrome are more likely to have heart conditions. My girlfriend has a 28 years old brother with down syndrome who I love very much and he's starting to develop some sort of condition in his heart. The exams are not conclusive yet, but I'd like to know, have you guys been through something like this? How was your experience? I'm very worried about his health :/

ps: english is not my native language so, sorry if I said anything offensive.

What AAC devices have worked well for your kids?

My husband and I are expecting our second daughter in August and we just got told there is a very high probability that she has Down syndrome. I’m really struggling with all of this, I feel like I don’t know how to feel or what to do. I’m so scared, and it’s hard because everyone around me is constantly throwing positivity at me and I know that’s a good thing but I’m still trying to process it all. Are there any parents out there who would want to share their experience going through this with me? I know the child is a true blessed and she is going to be so loved but trying to come to terms with it all seem so overwhelming right now.

We a couple have both 25 yo we got a daughter with translocation down syndrome, the lab told us to have a genetic test both of us to determine which one of us is a carrier, after some research i found out we only get 25% chance of having a kid without chromosomal defect, are there any cases that had robertsionnien translocation carrier and had kids with balanced chromosomes

Hi, my name is Danielle Sainato! I am an occupational therapy doctoral student from Kean University. I am interested in creating a new program for adults with Down syndrome to help with maintaining life skills through adulthood. In order to guide the development of this program, I would like to better understand what it is like to care for an individual with Down syndrome throughout their adult life. This survey is anonymous, and I will not have access to your personal information. For the purposes of this survey, the term “care receiver” refers to the person for whom you care for in any capacity, whether it is personal or for work.

If you are a caregiver for adults with Down syndrome, please consider taking 5-10 minutes to fill out the survey below. If you have any questions or would like to talk further, feel free to reach out at sainatod@kean.edu. I would be more than happy to speak with you! Thank you in advance for your support.

https://ku.co1.qualtrics.com/jfe/form/SV_6rLQd7ZQu6N0ogC

I'm really excited that my little guy is turning 1 this week, but I'm also feeling very sad. He was born Easter week last year, so Easter and this time of year are bringing up so many memories and emotions. His DS was diagnosed at birth and my husband and I thought we'd never stop crying, and then we had to tough it out and go full-speed ahead into orchestrating a move away from our home of 10 years, starting life over 900 miles away, and finding the proper care for our baby boy. I feel like I'm approaching an anniversary of a death, which his birth was, in many ways- the death of what we thought our lives and his life would look like.

I understand the sentiment I've seen of not being able to believe how sad you were at their birth and how beautiful life is now. I love my baby boy so much. I also still feel so sad about his diagnosis and the life we've been thrust into. I see the beautiful potential, I see how he has changed our lives for the better, I see how he is the perfect addition to our family, and I see how blessed we are to have him, but it's also really hard. I would be devastated if anything happened to him, but I also feel crushed by the weight of this calling.

I have other kids, and I know parenting is hard no matter what, but this is a lot of hard up-front that I didn't have with the others.

Maybe some of this comes from being one year in and finally being able to begin to peel back some layers and process his birth and his coming into our lives.

Did anyone else struggle with this in the early years? I know it's going to be ok....but it doesn't feel ok yet.

My son with DS is 3,5 years old and lately going to bed and to make him fall asleep has been a horror show:) we have a routine -toilet, brushing teeth, quick shower then in his room with a lightly red light i read two books and then i close the light so he can start sleeping. But lately he started to forcefully get out of the bed, kicking me with feet, tossing turning creating tantrums, this can go on over an hour until he is out and interestingly he is not like that with my wife, what can i do so it goes smoother, thanks in advance:)

Considering moving to Florida to be closer to family, specifically the Cape Coral/Fort Myers/Punta Gorda area. I would like to know as much as I can about the area as far as schools and meeting medical needs for my daughter if it will be the right thing to do for us. My daughter is 3.5 and currently in preschool, she has an IEP. She is in speech, and OT/PT and we will soon start behavioral therapy. What is the school system like for those that have school aged kids. She is also on Medicaid. I’ve heard bad and good about Florida and wanted to know others experiences. Are there respite programs? Family funding resources? We would be moving from Colorado where we have a lot of services for our kids. I just want to make sure I would be doing the right thing for her. I look online and see polished and pretty sites but I’ve also heard that Florida is not a very disability friendly state. Thank you!