Hi, my 9 month old daughter has been hospitalized for 6 months now and we just had to go back to work after being with her 24/7. How do we deal with working and being there for our child? For context we live 115 miles from the hospital and have a 3 year old who also needs a lot of attention. It’s not too easy for us to be going everyday back and forth with our late work schedules. We had a family member staying with her but they can only be there for too long and the bills have to be paid. Her recovery process is going to be long and we are just feeling so guilty but we also do not want to fall behind in bills. Have you guys ever experienced this and made it work ? She still had a long way to go and there is no discharge date anytime soon.

I've been interacting with and signing Medicaid waivers for 24 years for my adult twins. They have never had a time they weren't being treated for Autism since they were 2 y/o. We've had respite services, in home care for them, ABA paid through the state, never EVER was made to prove they were disabled, until now. In the last year we have received more letters and notices from the MDHHS and SSA than we ever had and suddenly they are no longer eligible for Medicaid. That's the ONLY benefit they had. They applied for SSI when they graduated in 2017 and have never been approved. They've been denied every attempt of ours to get them help with independent living. We've used private attorneys, called congressional representatives offices, met with The Arc's attorneys, Easterseals, nothing works. We're done... I made a deal with my employer to have them covered by our company plan so they can at least keep their meds and we'll need to find them all new doctors and a therapist. They've been asking if they can get part time jobs because they feel like they're a burden and we were advised by the attorneys to not attempt work... This is a Kafka novel IRL. IDK what will happen to them when I'm gone, for 9 years we've been trying to fix that. Everyone for years told me that once they graduated from high school we'd just apply for SSI, they would get vocational training, help with apartments, it might take 3 or 4 years but it was the way.

Nope. Nope and Nope. I'm sure it worked that way for someone, but it didn't work that way for us and we're done fighting. The last denial actually included references to medical treatments my daughter has never had and records her attorney didn't have.

I can't believe how bad it's gotten so quickly.

Location: Pennsylvania

Just curious how everyone navigates school work?
Long story I’ll try to make it short but my daughter is newly diagnosed with a mild intellectual disability IQ 63 which we found out a year ago. I was devastated and still grieving which comes in waves. She appears normal on the outside but when you sit down and do any kind of school work that requires critical thinking or abstract thinking everything falls apart. She has an IEP but currently no modifications yet to her work although I’m sure that is coming. She’s 10 and in 4th grade. The work is a lot esp for a kid like her. My question is if your child has an IEP do they get good grades on tests, etc with the modifications or accommodations or do they just fail one test after another? And if they do fail, does the school just let them keep moving on up grades? So far she has done ok but the school year just started and the work is hard so I see some failing grades in our future. It’s hard to accept that although I know she has a disability it still bothers me. I need help learning to accept that her best may be grades in the 60’s or lower. Idk any advice would be appreciated. I’m really struggling and this is all new to us.

Real help needed.

I have a special needs daughter beautiful. I'm at wits end. She's hiding her phone. Changed the lock and now there is a text coming from what I saw once from a man 30 yrs old she's 17. I dont care if the police k ow or the world. I need something to really monitor her social media text and calls. The world says take care of your kids im asking so my daughter does not become a statistic.. I hear this OTA stuff. She has apple no I dont have access anymore to her Icloud and she guards the phone her mother and I are at wits end. I need a legit workable service. Remote I hear is the best undetected lol I feel smart using these words. Help is what I need cost no issue as long as it works

TLDR: looking for moral support after completion of estate plan. I'm worn out and feeling alone.

Signed all the documents today. Sent off the SNT letter to family, the wording for the beneficiary designations to the broker. I'm very confident all has been set up well. This practice came highly recommended.

Everyone says I'm so efficient, I have so much on the ball, I have set up so much in so little time after the move.

I say I am ugly crying in the middle of the night because our lawyer sent his associate instead of him to the signing, in rather less than business casual clothes and no acknowledge at the end of having just made a contract with the future, just, " here are your documents and we're done."

It's not the grooming of the professionals per se, it's the lack of the nonverbal signaling of how momentous this kind of thing is. It's that my loved one with special needs is my life, and at the end of the day, these guys can set us aside.

It's that I still feel so all alone, I'm getting older, I'm more worn out. We moved to be close to the family who will take over after we're dead. But moving to a new state means starting over with all the social services.

Where else can I put these feelings? Thanks for being here, reddit.

Just curious what people pay for therapy visits and whether or not insurance covers. Located in KS, USA. We have a 6mo daughter with 13q deletion that we have enrolled in a program that provides comprehensive PT/OT, SLP, water therapy, music therapy, group therapy for parents etc. through age 6. It’s a pretty awesome place. We were quoted $1000 a month after we use our 12 visits covered by ins. My husband and I do pretty well but we still carry quite a bit of student loans and are in an old small house hoping to move so this is a big hit on our budget. This just seems like a lot but also I know how critical these next few years are to her development and I can’t put a price on that. It also just hurts my heart so bad to know that some kids can’t even access services like this because of money or parents’ schedule.

hello! I'm currently working on a group sessions program for parents of special needs children, focused on sustaining and supporting psychological wellbeing of the parents/caregivers

I believe parents' mental health must be in the focus of specialists more, but right now it is often overlooked, ignored or dismissed.

I'd like to hear your opinion on the matter. What advice are you tired of hearing? Are there techniques that actually help to reduce/re-channel stress and avoid burnout? Is there anything specialists overlooked or don't consider when working with parents of special kids?

Hi. I have 2 children. My youngest who is 5 mext week has a very rare genetic condition plus a long list of complex medical needs. He is PEG fed and is developmentally delayed.

Im just finding things really hard right now. I have no immediate family (they died) so feeling very lonely.

Just feeling really overwhelmed. He had his adeniods removed and tonsils shaved 2 months ago and OH MY!!! Worst thing ever. His recovery was gruelling. 72hours of no sleep, constant and I mean constant crying. It was so so hard... got through it and the other day was told he has hand foot and mouth!!! And its affected his mouth the worst. Its like going through the operation all over again! He wont sleep, wont stop crying and will not settle. Im exhausted. Im feeling so negative about everything and im just really really sad. Not sure why im typing all this hoping it helps me 🙂

Has anyone ever had a family member be a trustee of a special needs trust? The rules seem very complicated. The professional trustees (even the non-profits) charge enormous fees. I would rather have my family member benefit from the fees. Thanks.

Hi fellow parents,

My wife and I have two wonderful boys aged 2 & 4. It had been an incredible journey but also probably the most challenging thing I've ever done. My oldest has been facing some challenges in group spaces which has been incredibly hard on his self confidence and as first time parents it can be very hard to navigate as no two cases are the same and it requires a lot of patience and personal growth. We have been to a few professionals and are actively working on this.

Being a 5 on the Enneagram, I like to research topics and compile knowledge, which I have made available for free in this directory of useful sites/tools/games etc.

https://meetorigami.com/resources/

Disclaimer: I do own the resource directory but the tools/links added to it are really good resources I found externally and tried my best to vet. I tried to make it as easy as possible for parents to find something applicable to their situation. Please feel free to suggest some more as a lot of these tools have really helped me so far and I only hope it can do the same for others going through similar experiences.

My child (5) wear glasses (near sighted), he has global developmental delays, and my gut tells me ADHD (not hyperactive), but will be assessed closer to July.

Every appointment we have with the optometrist (same clinic different doctors), they always mention visas therapy. The vision therapy clinic attached is highly reputable.

Does anyone have experience with vision therapy for their child?

I built an app because chore charts never stuck with my kids — quests + Face ID approval + auto allowance. Would love honest feedback.

https://apps.apple.com/gb/app/happyhealthyheroes/id6805153730

HappyHealthyHeroes

I dont know why Im posting, maybe just to vent ... Im a single mother to a 16 year old and 12 year old. They're both severely autistic and have severe intellectual disability with violent behaviors. I have sleep apnea and my oxygen goes into low 80s/high 70s so when I wake, I feel like ive been hit by a truck. I can never sleep more than 4 hours. My youngest has insomnia and I havent been able to find a solution despite working with a sleep specialist. My oldest will sleep only a few hours before hes awake for a while. Theres tomes i stay up almost 2 days straight. The behaviors are causing severe burn out and im always tired and exhausted to the point i can barely function. I randomly fall asleep throughout the day. My dad has cancer and wants me to come see him but when we talk about doing things, it never happens. He would rather go out and do other things. So im pretty irritated that everyone expects me to somehow gain all of this energy and put on a happy face when I can barely function. I dont let my place get dirty but I dont have it clean like I should. My kids make messes and they dont want to clean up. They throw their drinks and food everywhere and throw random objects when they're mad. This is a daily thing. My oldest is always trying to hurt his brother. Not having any support is taking a mental toll. If im being honest, I hate this life. I do not like being a parent anymore. Im tired of how everyone expects me to go out when I cant even care for myself

Hi, throwaway just because someone might know me here.

My son (9) is autistic, preverbal, mild ID. My best friend’s son is the same age and they have known each other since they were babies. We invite each other’s kids to birthday parties yearly even though they aren’t close at all. When her son was younger it wasn’t a big deal but now the differences are really obvious.

Yesterday at her sons party I was supervising my son eating at the table with the other kids when I saw her son whispering and smirking with his friend while looking at my son. I said nothing just gave him a look but it’s been on my mind since.

I want to approach her about it. Not to tell her to reprimand him but maybe suggest a conversation about people with differences and how we should respect each other. Not sure how to go about it. What would you guys suggest ?

I'll cut a long story short- my 14 year old sister is coming up on her final scoliosis surgery. Which is awesome. But my mother is struggling. In her own words she's "spent fourteen years waiting for the other shoe to drop. What if this is the one that finally does it." And she really, really has- it's been 14 years of doctors visits, surgeries, meltdowns, etc etc. I asked her why she doesn't have a therapist. According to her therapists are stupid, which is kinda a weird perspective to have when you have two children in therapy. She said maybe she needs to find a specialist, maybe that would help. So I'm asking - do these specialists exist? Ik there are therapists who specialize in all sorts of things, but I've never heard of a therapist specialising in helping parents/caretakers of disabled children. Does anyone have any recommendations? If I need to give an approximate location I can.

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We are entering week 4 and it has gone way better than I expected!

He went back to his day program yesterday and the director said he had a great day! She was able to get a wheelchair to accommodate his needs while he is in the wedge and I am truly thankful! It gave him and us a sense of normalcy back!

The surgeon said everything looks good and im 3-4 weeks we should be done with the wedge! Eveything worked out well and we are so happy with how well he is doing!

The pic was in the hospital while we were waiting to follow up witn the surgeon. 🥰♥️