I would definitely be willing to help set with your precious daughter…
Dealing with same thing. He left completely and has no responsibility to his 3 kids. So I’m mom and dad and I can’t get a break for nothing.
Sounds like you need a new agency! I worked for one for years and we would NEVER let a family hang like that completely unacceptable
He should absolutely pay child support and you could use it for respite care through a private agency for when the night nurse calls off
Go back after that child support. You and your children deserve it. Shame on him for complaing about itband not caring for his daughter. Don’t try to force him. It’s also ridiculous they don’t have replacement nurses definately see if can locate another company.
I did respite care…in the home…here we have phenominal group houses where added needs individuals can live freely with care, supervision, everything you do at home…plus we take rhem to outings/ do activities and you can take them home when you want…just a thought
Keep communicating and pushing through. Soemthing will happen. Ik sorry your ex doesn’t acknowledge his own child. IT IS OKAY TO FEEL OVERWHELMED, TIRED, LOST, DRAINED. Dont doubt yourself. You are a super mom. There has to be more resources other than nurses. Ask for help. And counseling will help too
Get back in court and get him to pay that child support of 17% per child, if not… More!!! See if someone close to you can watch your kids while you have you time… I’m that kind of friend that would tell a mom to go have some time to herself… Take a nap, a long bath, or long walk… Sit outside and enjoy a drink or 2 and talk about anything. 
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He should be paying child support for the daughter he refuses to acknowledge. He made 2 bbs not 1!
Draw your boundaries mama. He can either step up or go back to court. Its that easy.
Please seek therapy ASAP. Also will your insurance allow you go through a different nursing company? Check around. If your daughter qualifies for 24hr nursing then you should be getting it.
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I would go back to court and get that support. That money could then be used to pay out of pocket for a nurse to come at night, when the agency has call offs. I bet if you asked on facebook someone would know a nurse looking for extra money. Stay strong mama, you got this.
Have you looked into respite care outside of the home. Also camps for the disabled? You are Amazing, and you also deserve a break <3
If you have a councilor at church, ask if you can get someone from church to help with child care if they have disabled children
Make his pay child support for her…that was the dumbest thing you could have done!! Everyone needs to pay for the children, NO EXCUSES!!! At least that would help you out some
Deffo go to child maintenance, whatever they calculate surperseeds the court agreement you currently have. Maybe worht advertising yourself to look for help for the evenings with your daughter? Agencies aren’t cheap so at least you could offer the same or slightly less for some. One to come in 
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I would say go back and get Child Support Ordered. And have a evening nurse come a couple times a week on the days your son goes to your ex’s house. This nurse will be there to help you while you go get a mommy & daddy power nap and prepare for the night just in case you don’t have a nurse that night instead of having your husband go down in hours these power naps will make all the difference. She/He would be paid out of your pockets mainly from the child support but you may have to pay a little too but I would say max 2 hours so you don’t mess up bedtime if you do get a night nurse that night and only on the days your son is gone. He knew what he was doing when he talked you out of the child support but he helped make her he can help pay to raise her. $100 equals $25 a week he is not being asked much I mean come on there are men out there paying so much more!
Was caretaker for granddaughter 3 years but only had nursing care the last year. Was so relieved when they did show up and was more work when they didn’t. Phoenix was fabulous. U definitely need some breaks with nursing care
Stop letting him off the financial hook! I understand the instinct to be like “then forget it, keep your money”. But your pride doesn’t help raise a child. And a crappy dad doesn’t deserve extra money in his pocket. Period. Step one, get him paying child support ASAP through the court! Believe me I have been there! You will regret it.
I work with a company and we have this problem with the house I’m working with. No one wants to come out and work if one of the normal ones call in. Most of the time they don’t want to work extra at houses that require a lot of work. I won’t work extra at my house because of the work and dealing with the family. I would find a caregiver or nurse you trust that wouldn’t mind coming to cover some nights when a caregiver doesn’t show, and pay them cash.
Discuss with the company if there’s a reason workers aren’t wanting to come work. Maybe the work, living condition, hours, or anything else. You may can slightly adjust whatever is the issue.
Possibly look into another company and see if they can provide better staffing.
Look into michelle p waiver. Its a grant that pays you or someone else to care for your child. It could be used to hire a nurse
Look into respite care, where a facility would watch her for a few days or a week to give the family a break, then she would go back home
flat out ask him if he knows he has two kids and put him back on child support and get the courts involved in trying to make him involve the other child i have 3 almost 4 kids (due any day actually) my kids fathers dont help at all and i personally prefer it that way my son has a heart condition and ADHD and hes not acknowledged by his father either just my oldest is and thats still minimal
Talk to a social worker. My friend had a very sick child and they got her respite care for free. This way you can get some time to yourself to breath.
Why would you make your child suffer just to let a whole man off the hook
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Look into respite care. I was a home health aide years ago but stayed up to date because of family and friends. First, the agency should be covering those shifts if there is a call off. If they are not, complain to the governing body and also to the payer. Agencies are prescribed by a licensed physician, so they are governed by a licensing board in each state. Second, please do not involve the ex! Child abuse is common of these kids and hard to prove. Not saying he would, but you never know. Third, consider private duty nursing for the hours the agency don’t cover. I would put it out there to new aides that it is for experience only, and see how many accept for third shift. Another way would be to check if your state pays for it. I was a private duty nurse for my mom until family issues arose. In which case, the state would PAY YOU as the private aide for your daughter. Check into every idea, and see what works for you. Good luck.
Kinda in a similar situation but my children aren’t special needs just young 4&2 we have 50/50 split and he don’t pay child support because he’s disabled and was watching kids while I work only reason he don’t have to pay child support now he doesn’t wanna watch them when I go to first shift called me selfish cuz that means he don’t get a break like I do (am not shitting you he believes work is a break for me 
) I just told him we don’t live in a society where I can find a sitter and trust the children are safe I’m most concerned with them being molested and him having it happen to him he should understand and that I was willing to work with him if he needed a break basically tell ur ex this if you don’t man up and parent up I’ll take you for the 50/50 meaning u pay 50 percent of her medical expenses that aren’t covered by insurance and if nurse calls off your on call cuz u take him back to court that judge will have a field day with his ass u can’t do that to a child oh ur too much work so you can’t come stay with me
Weining gets you no breaks! I don’t care when what where why. You can’t take that support away from her. Esp W his attitude. If he fully did what he should you could hire p/t care. Finacial help is non negotiable. Its. For her. I think you are doing pretty stinking good!!! You rock. Get the cash get some help w covid19 all my friends kids are home. But normally p/u at 7 am get home around 5?
Idk what state you’re in. But in NY there is respite services available to give parents a break even needed. Yes things are at a standstill right now with COVID-19. But it’s an option as things open back up
I have no advice, but I definitely am saying prayers for you. I cannot imagine the strength you have
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Oh my goodness. Where do you live? I’m a caregiver and I’d help sometimes but I’m guessing you don’t live near me…I’m in PA.
Well, it’s kinda your fault for letting the jack Ass get away with literally doing NOTHING for his child. I know that you can’t make someone love their child but you should’ve set Demands early on.
Take the hundred dollars and use it to pay for assistance. If he wont give assistance his money will. I doubt he will ever want to care for her. Dont release him from the money. You will be tired even if you give up the money.
Why did you let him off the hook? He should be paying for all of them regardless if he wants to see them or not. And tell him right to his face to fkn grow up! He has children not just a child and misogynistic attitudes about his children will not be tolerated.
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I’m wondering if you can get additional respite care. You need time for yourself.
Look I don’t care who doesn’t agree with me but stop enabling/coddling etc these able body fathers.
He’s slacking because he’s allowed to slack. Put him back on child support and apply for him to have to pay out of pocket if need for his part for a nurse for y’all daughter.
If roles were reversed a slacking mother would be dragged for filth so I’m not understanding for the life of me why especially women are not on board with holding fathers at the same high standards that we hold mothers at.
If you’re not in a good space physically/mentally/emotionally etc than you as a mother cannot possibly take of care of everyone else.
I wouldn’t have never taken him off of child support and he definitely would be contributing more especially when he physically not involved smdh 
I don’t care how financially stable you and your husband are. If he’s involved with one he should be doing with/for both, no d@mn excuses 
Why not ask him to pay for a cna for her over night? He doesn’t pay any child support! That would be a good trade off!
He got off easy with the $100 per month especially since he doesn’t see one of the two children at all. He isn’t acting like a father so why cut him any sort of break?
My the ex pay child support and use the money to pay for a nurse/carer out of your own pocket
Push the state. They can pay family members to take care of there own child. They dont tell you about that unless you really push and investigate.
Look into respite care. Put the Dad back on child support to help pay for it.
Make him pay child support for both his kids he needs to get over himself frankly I wouldn’t let him see either child bc I would be afraid he’d turn the older child against the younger one save all the messages and record all interactions and take his ass back to court if anything the visits should be supervised I’d hate to think what he would teach the older child
Don’t push her on him. Nothing good will come out of that situation. Definitely find a new agency.
Bitches about 100.00 a month for two children? Put his ass back on child support, relay all this to the judge and get that 100.00 amount raised. There’s no way I’d give him a free pass.
I don’t know where you live I’m in Montrose if that is close to you I could help
call social worker to find different company. In Ca. there are nurses who work for the county for just these problems. You are amazing to do all the work it takes.
I am a nurse and work with challenged children. There is help.
Get that child support. Get all you can and hire someone to give you a little break sometime and don’t feel guilty about it
I’m so sorry dear. You need a break. Only a parent with a disabled child will truly understand your struggle.
I would not have taken him off child support if anything I would have pushed for more child support bc of the needs of yalls daughter
The father should pay child support. Period. He also needs to pay for her medical care at least some of it 50 percent for the rest of her life. Get the state mandated amount of child support for both children and medical expenses paid for the daughter.
Im not sure if this applies or not, but just incase…if your husband goes part time; will that affect medical insurance?
I don’t know who you can call but I know somewhere there are organizations with both volunteers that help people like you.
Please post and as if anyone knows of one.
What area do you live in?
Back to court! Get that child support to get extra help. You can’t make him be a dad, but you can sure as hell make sure he pays his fair share.
Go back to court. He was only paying $100 for 2 kids?? You can get more! Then maybe he’ll care about how she’s doing!
You are trying to make your exes life easier while yours gets harder . Yeah something is definitely wrong there first off . If he can do for one he can confirm the other regardless . But if course at this point he wouldn’t see either kid
I would make him pay child support especially since he doesnt help out. He should take some responsibility. $100 a month isnt much.
First of all, your nurses should not be calling out. If its a scheduling issue, go to a different agency.
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Make him pay the child support and you can use that to hopefully pay someone to help you more. It’s a sad situation.
Your EX should be paying FULL support for your daughter since he never takes her. He’s getting away with this BS because your letting him. TAKE HIM BACK TO COURT. He NEVER takes her so he HE HAS TO PAY THE FULL SUPPORT in ADDITION TO EXTRA FOR THE EXTRA SPECAIL CARE SHE REQUIRES!!! He doesn’t just get to not support her because paperwork from the court says he has 50/50 custody he actually HAS TO HAVE HER 50 % of the time. Don’t push him to take her because from the sounds of it she would suffer tremendously so you need to have records to show he doesn’t take her or care to so when he says he’ll take her over paying the support the judge will see and know it is not in HER BEST INTEREST to go with him that he is just trying g not to pay the support.
Is there any type of social worker assigned to your daughter that can assist with resources for assistance?
Put him back on child support & if he complains, leave or end the call, if you’re on the phone. As for the night nurse, I’d talk to the employer about getting someone new and if they won’t, try to look into another place that provides home health care. Unfortunately, I would not force the dad to take him because he seems to not really know how to handle him and doesn’t care to learn so, who knows what he may do if he’s forced to take him and gets frustrated.
Lastly, if he doesn’t want to only work part time, that’s his choice and he may use the $ you say he “doesn’t need” on things he wants and that’s his right given you’re not together anymore.
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#1 you are amazing for reaching out for help. #2 make the childs father pay support for his child. This is not your battle alone and you need the financial support to give your child everything they need. #3 reach out to your childs doctors and tell them what you are experiencing. There is help. You are doing your part. You can’t give more when you have nothing left to give.
Good luck
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If he cN go with less hours but wants to work more can you take the extra money to pay private here and there so you can ho somewhere Nd get some much needed rest
Your ex needs to pay for both kids and acknowledge both kids. You should not have to take care of that child solo
Would help to know what state u are in. There are other programs besides nurses u may not know about.
You didn’t make them by yourself so you you shouldn’t have to take care of them by yourself, child support is the key
I’d force your ex to pay child support, he helped make the child therefore he has half the responsibility of raising that child until they are on their own and married
Put him back on child support. And get full custody of the other kid. Guys like that dont deserve to have kids.
It is a very sorry kind of a person to not acknowledge their child
- Get your c support ASAP! 2. Find another agency, you shouldn’t have to put up with help that doesn’t show up with no replacements
Look for back up plan for when nurse call off. Take time for you and your husband.
More money from the ex, means you can hire your own night time help. Do this you will be doing this for your girl.
Child support he should pay for both.
Christi Vail-Scandrol is right. I have worked for home care agencies and if someone called off and they couldn’t find a replacement then someone from Management or owner had to go in.
Where do you live see if there is a support group from moms of ceberal palsy kids. Maybe take shifts split up nights of the week so you can both sleep
Back to court! And if he does not take custody of her, he should pay more.
Also, what about his parents ? Can they help ?
Where do you live? I would love to come give a hand. Fingers crossed we are close🤞
I think the dad needs his 50 0/0 of the work
Make a kind of timetable for each day and make all follow that. Take turns with your husband or some other responsible person for doing and dealing with things.
If you had the extra money from cs owed you might have enough to pay for respite care! Take the dead beat back to court and get what’s owed 
Wtf is wrong with you? You took him off the child support? Are you kidding? $100 is not bad at all at one point my husband paid $800 a month
Where are you located? I would be willing to help with your child so you can have a break. I have done home health for many years.
Having a child with medical problems and needing nursing help is a struggle. We also deal with it daily. I only get a day nurse, but I’m a stay at home mom. We have 4 kids total. I dont have an extra nurse trained on a vent to come in if my nurse calls in (maybe 2-3 times a year, or even if she goes on vacation (she went to Hawaii for 3 weeks last year, which I was happy for her bc it was on her bucket list and she is 73 and AMAZING)). I completely get being tired. Im exhausted mentally and emotionally. The fact that you are seeking mental health help is a HUGE step. I admit it. I am in therapy biweekly and do life skills weekly. Along with marriage counseling (mainly working on communication). I take anxiety meds and will be getting back on depression meds. Having a kiddo like ours is EXHAUSTING. Don’t think you are in this alone. Parents everywhere are struggling, especially with the virus. If you are able to, take a week “vacation” and stay home and relax. You need “me” time. (I keep getting told this as well, so I need to listen to my own advice too). Hang in there momma. The struggle is all too real with me too.
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And take your ex back for child support…
Put his ass back on court ordered child support and do it through the court…he will end up paying more than 100
Does it have to be a nurse to care for her at night? What about just a family friend or something
You need to take care of yourself to take of the children. Please , lm still learning to stop once a while. I’ve been on my own for 10 years. My daughter with autism and my son with cerebral palsy. My ex 2 refused to pay and wouldn’t take the children. I ended up with depression and no good for the children . I had no family support at all. It took so amazing friends to take the kids and a few moments of time of wanting to end it all but with help the psychologist and the amazing school the children attended l realized l couldn’t do it all on my own…u need respite. Even if it’s one afternoon a week. Just u time. I still have time when things get difficult and lm slowly learning to say yes to help. But if you have NDIS use all it’s resources. Stay strong and make your ex pay. I recv $ 35 a month from mine but it was the principal of for me.
Good luck lovely xx stay strong they need you smiling to thrive and grow up to be the best the can be . 
Delegate responsibility where it goes and get more helpful people for you…
Can you nap with your child when she rests?
Time to look at putting your daughter into some kind of care home before you guys end up really sick So start doing research
put the pos back on cs and make him pay more then 100$ a month. find a different agency and get new nurses
Do you get any respite care? Do you get paid to care for her through IHSS?
Mama! You CANNOT pour from an empty cup.
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If he doesn’t pay child support how come he’s not in jail ?
Thatchild support is for BOTH children. Shame on him for not having anything to do with his child. Oh and the support my husband when we got married paid 1000 a month for 3. 100 is nothing trying to raise children
Maybe privately hire someone for overnights?
I would have him pay child support and hire some help, stay stong mom
I have no advice but i am so proud of you mama! Im praying for you!
Problem with this he doesn’t acknowledge his own child so if he were to take they child just imagine how he would treat her…
Prayers