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[quote=Anonymous]I am a mom of a kid with profound intellectual disability (much more severe than what you describe) and I have a “high powered” career (a silly term but trying to equate to what you may be stepping into). Like you will have, we have 70 plus hours a week of help in our home. I travel once or twice a month. I have a husband with ADHD who isn’t going to proactively manage a complex schedule but can show up and manage whatever I ask him to put on his calendar and is great with routines like “take the trash out on Tuesday and do all the laundry on Saturday.” He can clean a lot too, He also has a job that he is good at (but likely could be even greater at it if he would medicate his ADHD). He is also super supportive of what I do. For example, a number of years ago, I went to Asia and back three times in a seven week period and he was totally fine about it.

Honestly, we are doing great. But, I also accept that I’m not the primary caregiver all the time (or even most of the time). I’m rely on caregivers to do a lot and my husband does a lot as well. I also fully believe that whether special needs or NT, we are just parenting around the margins. No amount of intense therapy is going to change anything in some extreme way and as a result we have cut stuff over the years. I now look back and realize I wasted a bunch of time and money. I also believe the best thing I can do is earn as much money as possible as Medicaid is gutted in the US. My daughter will need a group facility to live in as we age.

I will say one difference is that neither of us is prone to anxiety or depression. It sounds like you are getting that under control, which is great. I do think you have to get a plan on medical stuff if your husband really can’t handle it. My other kid had brain cancer when she was very young. We got comfortable with our nanny handling the blood work only appointments which were weekly. My husband and I handled the two brain surgeries, the week in PICU for meningitis and the 16 months of chemo, but the nanny could go get the blood work once a week, take her to the regular ped, get her checked for strep throat etc. I’m sure many people would judge that, but it worked for us. Can you FaceTime with the doctor and your husband if you cannot physically be there?[/quote]

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