I knew, but had NO idea
I haven't posted, but have been reading everyone's posts for months, so I still feel like a STalker. 
Read past blogs for more, but in short, FDH and I have been together for 8 years, JUST moved in together in January, got engaged last year. I have no kids, just my beloved furbabies (cat and dog). SD19 is off at college, living with her long-term boyfriend, visits on holidays, occasional weekends, all is fine there. SD14 is being your typical annoying teenager, I look forward to when she becomes human again in a few years. SS13 is autistic, but high-functioningish, depending on the day.
FDH and I have been through plenty of ups and downs and we are usually on the same page regarding skids and other household stuff. Since we moved in together, he's been really great about having my back. Before this, we discussed and agreed upon FDH's new travel schedule for work. We mutually agreed that he would clear travel arrangements with our schedule first, and I would take on all skid duties while he is gone. The travel schedule is roughly twice a month for 3 days at a time. This may extend into a longer trip of 5 days at a time when he needs to go international. So far, so good.
I've been in the skids lives for almost 8 years now, met them about 9 months after FDH and I started dating. He has had full custody for almost 7 years now, BM gets most weekends, but skids are older now so when their extra-curriculars are in season, we have them weekends as well.
I KNEW about SS13s autism and his issues. I have experienced and witnessed a lot over the years, even though we haven't lived together. BUT. He is getting worse, in a sense. It's heart-breaking, nerve-wracking, time-sucking, life-changing, soul-stealing, zen-killing stuff. He's physically a 13 year old. Depending on the type of day he is having, mentally/emotionally anywhere from 5-10 years old. His impulse control and OCD have always been front and center, but it's soooooo bad. AllDay.EveryDay. He cannot be trusted alone in a room by himself, cannot walk to school, cannot complete any household or hygiene task without supervision. And the poop issues continue (shoutout to Cooooooookies and my other sisters in $hit). It reached critical overload a few weeks ago when my FDH opened the bathroom door to check on SS and found him EATING, yes, that's right, eating his poop. Swears it was the first time he did it and hasn't done it since. Not sure I believe that.
FDH has run through all the hoops of doctors, psychiatrists, teachers, administrators, insurance, therapists, and medications. SS has an IEP, has been on one ever since FDH got full custody. FDH finally filed for SSI for SS a year or so ago, finally coming to terms that it is not likely that SS will ever be able to live on his own. BUT. You can't undo years of neglect and dog knows what he all went through when he was with BM full time. SS has been on meds since he was 5.Years.Old. BM doctor-shopped until she found one to get the magic pills to "fix" SS at the ripe old age of 5. He started out with Adderall and has been prescribed, at one time or another.....Adderall, Ritalin, Namenda, Xanax, Clonidine, Vyvanse, Intuniv, and a few I'm sure I've missed.
So, before this turns into a novel.......I knew.....but I had NO IDEA until I was really in it 24/7. More to come, but there you go.
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Comments
It's good that you are
It's good that you are working to get him "in the system". My Dad had a friend who had a son with "problems"... (nothing officially documented/diagnosed.. just a level 9 basement dweller type). So she was eventually dying of cancer and has this boy who has never really worked or lived alone.. and turned down for SSI because there was no real history of his issues.. and now he is in his 40's. She has passed and apparently he is living alone for now, but not sure how long it will last.
OMG!!
"found him EATING, yes, that's right, eating his poop" What the actual F? In all my years, I have NEVERRRRRR heard of such a thing??! I could see if MAYBE he was an infant and didn't know better.. but a 13 year old, Autistic or not, must certainly know better??! Did DH take him to the Dr.?? Can't you get serious parasites or bacterial infections or something from ingesting fecal matter????
SS knows. He only likes non
SS knows. He only likes non-fiction, so he's been into human anatomy, sharks, outer space, the ocean...whatever he's fixated on at the time. The only thing I was ever able to get out of him besides "I don't know" is, that because it is HIS poop, it's OK. And he was only trying to get at the undigested food in his poop. I cried HARD that night. He's just so damaged.
Where is BM?
I have to ask. Where is BM?
What is the treatment plan and what about school?
I hate to break it to you but your future husband, the kids dad, needs to present during his time. YOU are making a huge error in judgement taking this on now.
WHY are you agreeing to this. Do you think your should, or that 'thats what wives do'?
DarkStar
Darkstar, i just re-read your post...dh has full custody.
WOW
Saving grace
This may sound horrible, but both FDH and I know that this is our temporary situation, this is not our permanent or our future. We are both working hard to try to help SS and provide as much support and services that we are able, but after high school or shortly after, he's going to have to go into some sort of halfway house or something.....hence FDH filing for SSI a year or so back. SS will need to be on SSI in order to qualify for those services as an adult.
How could
How can your SO have a job that he travels 3 to 5 days two times a month ????
he must stop traveling, or change jobs to be home with his DS every night of the month. You can not handle this kid by yourself Totally unfair to you
We agreed to his travel schedule
Before we moved in together, FDH did not have this travel schedule. He had the kids full-time and I lived in my own house. We thoroughly discussed and agreed to his travel schedule. This is not a problem. It's stressful, yes, but we are getting through it. FDH is being very supportive, he even offered to cancel his next trip after the eating poop incident. SS's behaviors do not improve when FDH is around. In fact, last night, FDH got back from a trip, he left Monday morning, and SS's behavior was just AWFUL last night, total attention-whore/baby-talking/annoying behavior.
You are a far better woman
You are a far better woman than I. And taking on this responsibility and taking it seriously is a gift to the rest of society, so, thank you for doing it.
It's great that you're forming a long-range plan for his adult housing. It's a gift to him for which you'll never be thanked.
I'm hesitant to mention this, but not all adults are eligible for group living situations. I think you should prepare yourself for the possibility that group housing isn't an option. Have a Plan B. And be careful about thinking this isn't forever because you don't know that. This skid is so young, you don't really know how the autism will play out as he ages.
Group homes could be defunded and closed (this is what I would most fear these days), your SS might have sexual proclivities or violent episodes that make him ineligible for group living, and then there's the simple issue of finding a space for him in a group home. Some people wait years. Sometimes group homes aren't what they're supposed to be - there are hygiene issues, abuse and neglect issues, funding issues, etc. Horrified families remove their relatives but then face the problem of where to put them.
I'm glad you are familiar with the situation after 8 years - that's a nice long time to know the challenge and realize your fiance is worth it!