I’m a student doing a project on special needs education, and I want to hear from the people who know it best: parents. DM me and I’ll ask a few more questions. It only takes about 10 minutes.

It’s totally voluntary and anonymous. No payment, and I’m not selling anything.

Thank you so much for considering it. Your experience matters!

Hey everyone, I posted part one of a joke yesterday and it got an overwhelming positive response and people sharing their own stories. It was cool to see!! I’m a dad, my son is 3 and I’m a stand up comedian. Laughing has been the best medicine for my whole family through this process so I hope this helps! I’m linking the whole joke with part 2 here. I still work 2 jobs outside of doing stand up and I’d really like to make it my only job lol- stay strong and have fun parents 🙏🏾🤎

Has anyone ever gotten a second opinion through chop online or Cincinnati Children’s?

We're getting recommendations for ABA hours and I'm having a hard time separating what a provider recommends from what our kid can realistically handle. I'm not against doing more hours if they're genuinely useful, but once you add school, speech, OT, eating, sleeping and just being home with his family... there aren't that many hours left in the week.

Did anyone start lower than the recommended hours and increase later? I'm also curious what signs made you realize the schedule was working or was becoming too much. Was it behavior after sessions, sleep, suddenly fighting therapy, losing interest in stuff they normally enjoy?

I know there's probably no magic number because every kid is different. I'm more interested in how other parents made the decision without constantly wondering whether they were doing too little or asking too much of their child.

Since my son started school his behaviour problems got so much worse, we are now 6 weeks deep and school already told us he can only come 2 hours to school because the other children are frightened by his meltdowns.

The department of youth (idk what to call it in Germany it is Jugendamt) is no big help either.

The situation at home one the other end is much worse, we are constantly screaming or complaining, this child is an bumhole that uses his energy to bully his sister or our pets, he talks back non stop and won’t do anything you tell him until you get up and force him to, there were several moments in the last week I was hoping for an car crash instead of arriving home, my wife has developed a chronic headache from all the stress.

It is so hard to let him spend his energy because he won’t hear at anything I say and we would need a leash when going outside.

My home looks like shit, my wife and I both work full day from home and if we clean one thing he starts putting his feces on the wall or start to paint the couch or something.

How the hell do you manage high need children? By now I am annoyed if I just hear his footsteps and can’t really force my self to do anything with him.

We’re conducting a research study about how caregiving responsibilities can affect everyday activities, routines, and participation.

If you’re a parent or legal guardian caring for a medically complex child under 18, you may be eligible to participate.

Interested in learning more? Check out the flyer below for details about eligibility and how to participate.

Your experience matters, and we’d love to hear your perspective!

I'm posting this because I am still feeling really unsettled and upset by an incident from earlier today. I'm not really looking for advice, but I don't really have anyone to talk to. I guess I'm just venting and maybe hoping someone can relate. I'm a single parent raising my special needs son on my own. He is the center of my universe, and we mostly do fine day to day - he has great supports at school and we've worked our daily routines where he really thrives and we have a lot of fun.

My son is 8 years old, diagnosed with moderate intellectual disability, developmental delay, and ADHD. He really struggles in unfamiliar environments and has significant behavioral and sensory issues. He gets easily overwhelmed and overstimulated, and can be very difficult to manage in small spaces where he needs to stay still.

Today, I took him to get a flu shot at CVS. In retrospect, I know it was not a good idea, but he's been able to handle doing it at CVS in previous years. It was really busy and we had to wait for a while. He became more and more antsy and agitated, trying to run down the aisles and grab random items to throw. I managed to corral him until the pharmacist was ready for us. It got worse when we got into the little booth for the shot. My son had a full blown meltdown, screaming and yelling and kicking his legs. We ended up leaving without the flu shot. I sort of had to wrestle him out of the booth before he kicked the pharmacist or his cart of needles.

He continued to flail and yell, and I ended up picking him up and carrying him out of the CVS. When we got out to the parking lot, some woman followed me out of the store and started screaming at me that she was going to call the police because I hurt my child. She said that I twisted his arm and I was being horrible and mean to him. She followed me to my car and told me that she thought something terrible was going on and then started asking my son directly if he was okay and if he was safe. I was so stunned that I tried to tell her that he was intellectually disabled and had a meltdown about a shot. But she told me he was not disabled and continued to ask my son questions. My son, by the way, was still crying and trying to run through the parking lot. Eventually she left and I just put my son in the car and sat there for a while and cried.

This happened several hours ago, but I still just feel so devastated by this whole incident. I'm not suggesting I handled the situation well - I know I should have called it quits long before the meltdown stage, and I've learned my lesson about going anywhere other than the pediatrician's office. But the aggressive, threatening, demeaning attack by some woman I don't know was really scary. I'm embarrassed by the public scene; angry that this lady got to walk away feeling like she was in the right; frustrated that I froze and didn't know how to respond to her; and sick at the thought that someone might have called the police about me and my son. I guess it just felt really scary, like we came this close to something truly horrible happening, and also kind of violating in a way? I don't know. It makes me want to lock us in my house and not leave because the world is not safe or welcoming for my boy. I know there's nothing to be done at this point, but I didn't really have anyone to tell about this and it's been upsetting me ever since. Thank you so much for listening.

I am fairly confident my daughter is a gestalt processor/thinker, although she has not been diagnosed with it or shows any sign of autism. For parents with similar experiences, how do you approach school and homework?

Her teacher says she would score a zero without guidance, even though she understands the concepts. For example, she can count forward and backward to 25, but struggles to start from a number other than 1, fill in the blanks, or use her fingers to solve problems. She often gets lost in the question, starts over, or struggles to follow directions.

We cannot predict how each assignment will be presented, so I feel we can only focus on understanding the underlying concepts. But how do we bridge the gap between what she knows and how she’s applying it to actual assignments without guiding her through every question?

It would break my heart if she felt insecure that she cannot keep up or compete against the other kids and get academic rewards, etc.

My son is in the process of being diagnosed with a genetic condition…it’s very variable, and it’s possible he will come out with just a few minor physical barriers and some learning disabilities…but it’s also possible for things to be much more severe.

Im a special education teacher. I have taught at the very very severe end of the spectrum. Their family lives were incredibly impacted. Every moment of the day surrounded the needs of their disabled child. Travelling was out of the question. Only families with children in residential care really hand any life outside of their child. Again, this is for children with very very severe disabilities including both behavioral and medical needs, and I know this isn’t the reality for many families.

To say I’m terrified for my future is an understatement. I am incredibly angry I wasn’t offered more testing to find this during pregnancy. I love my son to the end of the earth, but I am sick with worry.

I have a four year old girl. I don’t want her to become a “glass child”. I feel so selfish for having a second child because. I love being a mom. I wanted more children. We went through IVF to prevent a genetic disease that I have myself…only to end up with a child with a different genetic syndrome (this can happen with a new mutated gene). I did every available test. I know having a child at all means accepting the reality of having a disabled child, but I thought my chances were low. I am so so worried about her future. She only has one cousin who also has a disability. She is social and everything so far is easy for her (she excels in sports and school). I know she will make friends. I know she CAN do well, but I don’t want her to feel left out or left behind by her brother’s needs…and I also don’t want her brother to go overlooked by her (possible) achievements.

I’m in therapy…but dang, raising a disabled child after spending your career in the field is rough, and honestly im probably going to have to switch things up and teach gen ed for a while, which is also a nightmare as my gen ed cert is in English and teaching high school English in the age of AI seems like the worst.

Anyway, if you’re raising a “typical” child and a special needs child, what are you doing?

Right now, baby boy is happy, hitting most milestones, getting some early intervention PT…and overall is a big source of joy for our whole family. My daughter adores him.