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[quote=Anonymous]Ok. I also have a kid with a rare genetic disorder that hasn’t slept through the night in 13 years. Sleep deprivation is torture. The key difference I have is a husband that is helpful. But I can clearly imagine the world you are in so I hope some of my advice will resonate.

1) you have an incredibly high likelihood of divorce. I don’t mean this unkindly but parents in your situation absolutely have higher divorce rates and you have to layer onto this the fact that your hsuband isn’t helpful. DO NOT QUIT YOUR JOB.

2) you have to get more sleep. Consider hiring a night nanny a few nights a week. If your kid is going to melt down asking for you if you are in the house, then go stay in a hotel when the nanny is there. If you are considering quitting a 160K job, you can likely afford this at least one night a week. Alternatively, would your husband deal with her if you were at a hotel? While I have a helpful husband, night wakings were the one area we had major conflict over. I started looking at studio apartments to spend every other night in as a solution. In my case, this led to my husband stepping up ASAP in this area. You might actually need to rent a studio or get hotel rooms or Airbnb.

3) you need more evening and weekend help. It sounds like you need to structure this for when you are out of the house. I don’t know what this looks like for you, but really think about how to make it work. Go on care.com and search for college students with special needs experience. I’m in a college town and this has really worked for us for 13 years for after school and weekend help, I’ve written many a recommendation for OT, PT, ST grad school and med school. My kids genetic disorder has been discussed in many grad school interviews for these college kids over the years.

4) this is a marathon not a sprint. Do whatever you have to do to survive.

5) if you have not taken your kid to a neurologist that is a sleep specialist, get there asap. And don’t be afraid to medicate this kid to sleep. My kid takes 5 meds to sleep. She still doesn’t sleep through the night but we do get more sleep than we used to get. most  parents with my kids genetic disorder regrets that they waited too long for sleep meds.[/quote]

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