Now could you do a film about how you parent a special needs kid as a single person?

My local theater is showing this documentary and as a fund raiser for a group. I will attend. I am one of those moms. I never realized how much it has affected me and in so many ways. I also found out that the same non profit showing the documentary has a group of caregivers on their calendar that meet. I'm going to check it out.

I'm one of those moms.

I could not have said it better. Total truth in all your words. I have a 39 yo son with Down Syndrome and autism. I feel like I do not belong with either groups. My son moved into an adult family home in September 2019 he was kicked out September 2024 due to aggressive behaviors. He is now back home. Over the years in this adult family home (AFH) so many negative things happen to him. His overall experience there was horrific! When he was asked to leave I had already been looking for other living arrangements for him. So many of his behaviors came about during his years there plus he has acquired many health issues. A week after moving in he ended up in the ICU on a ventilator for RSV. He was hospitalized 6 weeks and came very close to dying. He was intubated and reintubate 3x, he had a couple of major seizures and coded, (no history of seizures) and a blood clot. He has never been the same since. He has also developed many other medical problems. Early 2020 -2 months of recovering from his RSV, Covid hit. His AFH went into lockdown. It just spiraled from there. So often I see the pictures of my son from birth to teens and he was so cute and so loving and life was kind of like having any other child. I mean we had all his therapies and he reached milestones later but he was so darn cute! I wonder too what happened to that cute little boy. How I want him back. Live seemed so much easier back then. When I see these FB support groups for Down Syndrome and see all the so very cute little ones and hear the hopes and dreams of the parents and their excitement, I want to say you have no idea what awaits you and your child. However right now I believe they need that and feel it. When harder times hit they will have formed that very strong bond with their child. I remember all those feelings so well. You are right about supports trying to find them as our children age becomes harder and harder and by the time they are 18 and considered adults and move into a new phase of their lives supports seem almost nonexistent. You read articles about the need to support caregivers but they are always referring to children taking care aging parents. I have been there too. However they fail to recognize the parents taking care of the children with disabilities, which is a lifetime commitment. They just don’t seem to recognize it of just don’t think about it. We have to be louder and visible because most people have absolutely no idea and just haven’t made a connection.

And the ones who will step up will be caregivers who get it. That’s it. We need to band together. No one is coming.

What an absolutely powerful and needed video! Thank you from a Caregiver of several years, Tracey Doncses

Not only have I had to deal with the isolation that a special needs child brings to the family dynamic; I’ve suffered a double whammy by going against the grain during the Covid years when I elected to remain vaccine free and lost friends and family. Being a single mom, I don’t feel as if I have anyone in my corner. It is heartbreaking.

It is hard to be happy, or at peace I have no friends no supports. At 62 i dont know how long i can keep up My daughter was abused at 2 groups hones over a period of 6 months so she is home with me She is 27 and i adore her but i am physically and emotionally fried

Why not raise the money to make this public? Please share what you need to do this. The documentary shouldn't be unseen! Surely!

Where can we watch this

I was lucky that my son was able to go to school. He loved the socialization but I needed that so I could work. I was able to find a job that let me work around his schedule and they were flexible with his hospital stays. I used FMLA once. He's an adult now and home with me and out of school. If I couldn't work from home I would have to quit my job. I'm lucky I've been with my company for 18 years. I've had very flexible bosses.. We really need more options.. trying to find a day program is impossible there just aren't any

I was so grateful - time and time again - that I was already a home mom when my daughter got diagnosed. There is no way I could have worked a set schedule with the needs to be available - both at the drop of a hat if something happened at school (seizure) and for many many appointments.

Yep. This is it. These moms are amazing. Doing the best that they can every single day. I’m one of them. The balancing act is almost impossible, but we have learned how to do it because it’s the only only thing we’ve ever known. 💪🏻💪🏻💪🏻

No one cares. I am at the end of my rope. I am dying inside

Yep. 22 years for me so far ... and at 21 all the pediatric supports dropped off. As I get older my biggest fear is what if I can't do this anymore? There are only 2 ways this is going to end - 1 - I will outlive my daughter, or 2 - I will become incapable of her care or die and she will.... uhh... actually there does not seem to be an answer to that. She needs hospital level care. No answer.

It’s the hardest thing to do as a special needs parent.

I have 2 children non verbal with severe autism a girl and a boy. I relate to this so much and the feeling of isolation and worry I feel is unbearable at times.

Being a caregiver has taught me how to count the steps forward Don't look at the steps back Go forward no matter how big or small sometimes it's a struggle but we just keep doing it and keep moving forward

Caregiving is unimaginably hard and you can’t truly know what it’s like until you’ve been there. I’m not a caregiver myself but my mom was a caregiver to my brother with severe autism and intellectual disability, he could say a few words but not sentences and only has the cognitive ability of a 3 year old. Everyday he would physically attack me or one of my parents, yell constantly, and smear his poop on the walls of his bedroom. (Among other challenging behaviours that were impossible to deal with) It was exhausting for all of us, but especially my mom as she was the main caregiver as my dad was out working and I was just a kid. My mom tried everything and took all the advice she could from my brothers teachers and therapists and other special needs parents in similar situations, but nothing worked as my brothers problems were so severe and all my mom received for it was judgement about how she must not be a good enough mother if nothing ever works. Eventually, the very difficult decision was made to send my brother to a residential treatment facility for kids with severe developmental disabilities when he was 13 so that he could receive 24/7 therapy and the best quality of care possible. This does not mean that my mom doesn’t love my brother or that we abandoned him, she made the best decision for him and for her as she was at her breaking point and my brother needed a lot more help than anyone in the family could give him. We also talk to him on the phone frequently and visit in person once a month. He is 19 now and has made so much progress. And for me as the “normal” sibling, my mom would often cry and vent to me about how she just can’t do it anymore when I was as young as 7 years old, and that caused me a lot of trauma, I had to pretend to always be ok and act like I wasn’t struggling when I really was. I have my own issues with ADHD, learning disabilities, anxiety, and depression, but I could not express these feelings to my mother because it would only add to the stress. My point is, give caregivers grace, it’s certainly not easy, and no one has the right to judge unless you have personally been there, and even then everyone’s situation is not exactly the same. I’m so glad there is a documentary shining a light on this taboo issue that no one wants to talk about. Where can we watch this?

promo sm

I have a seven year old daughter with Angelman syndrome, and this is so true

How do I view the documentary?

An issue I am having is that I'm a single mom My son with autism is 29 and I'm the only one taking care of him I have raised him from day 1 However, since he is an adult, I need to go to court to get conservatorship of him which is VERY expensive The court system is so messed up when it comes to this

89 views……. Perfect reflection of the lack of interest In caregiver lives…. The loneliness alone……. And what about single moms doing this? Dads that break free soon after the child is born? Where is the help for them? Sigh 😢

I just watched this program. I am my husband's caretaker for a progressive disease and to be honest lately I have felt as though I am failing him in his care. I get frustrated, tired, my body hurts too, and these do have an impact on how lovingly I may be to him. Then I feel guilty and beat myself... the demands and responsibilities are endless as I tend to him, our home care, house repairs, and finances alone. Every topic, concern, & need in this program affected me. I don't have any answers but I do feel encouraged, validated and empowered to stay strong and continue to do my best for my husband. I worked in the healthcare field for decades and will say that caring for a family member 24/7 is the most demanding position I have ever held. God bless everyone who is a caretaker to a child, spouse, or stranger. You are remarkable and valued more than you will ever be told or know. My heart goes out to everyone! Excellent program. A must see for every caretaker. ⚘️ Thank you!

Why cant I watch full version online? I saw last 5m on PBS, and want to send this to someone in my life who is an unseen caregiver.

It's supposed to be airing at 8:00 p.m. but I can't find it anywhere. I've downloaded a PBS app not there... And it doesn't outright say in order to watch the show you have to be a member/passport. ? Any information to be able to watch would be greatly appreciated.

Your not alone Jess. I also understood the demands of caregiving for my medically fragile big boy son in diapers🙏♥️

Thank you Jesse, yours and your families commitment is amazing. I'm caregiver for family member. So much more you manage when carerecepiant is your child. I think we also need to step up if we see a parent or family member being hurt, they matter as much as person with disability. We do need to give more funds and choices for family members caring for special needs child, government prayfully see important and difficult job you and family do. Jesus cares, He is way...John 14:6, praying

I have a son with level 2 autism-adhd combined type-oppositional defiant disorder and I have a daughter and I am the main caregiver to my mom. 3 years with her and no breaks. I feel like I am chained to the apt.

Magnificent My friend

😢

You are not alone. You sound like an amazing mom and caregiver. Have you ever consider having professional help for your son either at your house or residential facility? Sounds like either you, someone else or even himself could be seriously injured if he is not managed professionally.

Powerful!!!

how can i watch this??

I have two children, both with profound needs. This is much needed awareness, thank you for sharing!!

I have 3 boys with autism one more severe and I'm just so tired

Please unleash this video. It would reach a much bigger audience if it wasn't held captive.

Turn the documentary loose. It's not doing much good with limited viewings.

Where do I find the actual movie? What platform to rent?

This premiered back in May and I am just finding it now. Please make this documentary available for people to actually watch. As a caregiver for my adult child with disabilities, I would love to be able to share this.

I'm just now finding out about this and would love to find where I can see it. I also want to stand up for us siblings. It's not an easy childhood growing up with a brother or sister with any kind of special needs, especially adding in the knowledge we hold every day of our lives that we will have to step into our parents role one day. We watch our parents, and learn from them. Then the day comes we have to step into that role.

So well stated! You seem like an excellent champion for this incredible program.

I have left parks this way so many times!

Thank you for making this incredible documentary and giving caregivers everywhere a voice to be heard. You really don't realize just how difficult it is until you hear it from other parents.

Will definitely be watching this when it comes out.

Gives me chills...

What a special young man my grandson is but it has taken a toll on my daughter and son in law.pray this helps all

😭 thank you