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[quote=Anonymous][quote=Anonymous][quote=Anonymous]Are the two of you able to discuss things in a reasonable and rationale way? If you are, you need to start with a plan for the kid.

Have you tried all medication options? Have you explored every state service an available to you? Do you have enough money to outsource having a third person in your home for certain hours each week? Do you have friends, family or church community that might help you! Do any churches have respite care for special needs? We are able to drop my daughter off at a Buddy Break (look for one in your area) once a month for three hours for free. If you could tolerate church, find one with a special needs program and take your kid to Sunday school and church. That can be a two hour break and you can let the peace and music of the service wash over you even if you are not particularly religious.

Our daughter with profound intellectual disability was similarly challenging for many years. We basically hired a nanny/sitter to be in our home for large chunks of each week. It was just so untenable. We have had all kinds of different help in our home over the years — everything from super professional nannies to young teens. All of them have been helpful in different ways. Basically I hire a third set of hands and then figure out the best usage of their time. If the fourteen year old likes to cook, they can meal prep. If the older nanny is a whiz at running errands, they can do that. If I find someone that can really be hands on with my kid, they do that while my husband and I do the home stuff.

It was particularly difficult because she didn’t sleep through the night so you might have to start your day of vigilant caregiving at 12:30am or some other insane time. If this child doesn’t sleep, you should absolutely explore all medications for sleep. My child takes five medications to be able to sleep fairly consistently to 6am (she is a teenager).

Spend six months with intense focus on medications and outsourcing that can help. During that time, figure out if you have an EAP that covers marriage counseling and try to get your spouse on board with going. When you get there, tell them that your focus is on how you can partner better in dealing with this extraordinary situation and cope with the grief of what you thought family life would be versus reality. Don’t even get into sex, love, etc. Do that for six months even if it has to be virtual.

After that, start to see if things settle down and you can approach the hit button issues, like sex.

I’m very lucky to still be happily married but I had 18 months (in 15 years of this parenting journey) where I spent a lot of time considering if only seeing my kid 50% of the time would be easier or harder.[/quote]

Op here. DH and I barely talk. He has completely shut down in recent years. He just can’t handle life. Or being married. I’m not sure and I’m tired of figuring it out. We’ve worked with 5 different therapists, 2 of them for over a year. It didn’t help. At all. I don’t want to go back to couples therapy. DH isn’t genuine, he’s at best a leaf in the wind and just says whatever seems to be the easiest thing to say in the moment and then it’s as if the conversation never happened.

Yes I’ve tried to get my DH to the doctor and medicated and in therapy. He doesn’t follow up. With tremendous pressure he may attend an initial appointment that I scheduled for him. He won’t consistently follow up, if he follows up at all.

Yes sleep is a problem. Yes we have a psychiatrist and a sleep pediatrician. We’ve done sleep studies. He takes multiple medications for sleep at night. They don’t always work and nothing has been a consistent solution. I’m working on getting a Cubby Bed which might help but it’s very hard to get them approved by insurance because they are so expensive.

I’ve tried so hard to build better support networks over the years but we are already paying for a full time nanny. I can’t afford a 2nd one. So then I’m trying to patch together care with a bunch of respite providers and inconsistent part time people. I find it to be a lot of work with unpredictable rewards.[/quote]

How does he do with the nanny? [/quote]

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