Marriage, Family, & More.

Please understand **** I AM NOT ADVOCATING THIS****
But... years ago special needs children were 'put away'. Doctors recommended it. The kids were institutionalized their entire life and quite often the family never saw them again. I know those institutions were horrible but I kinda understand why things were done that way.
I have 2 special needs grandchildren and I love them and enjoy them. I would never want to see them institutionalized. I totally understand where you are coming from.
Have you looked into respite care? My older granddaughter, 13 yrs old, who is autistic can go for weekends to a respite care for a weekend. Her exhausted parents get some alone time and much needed rest. You might want to look into it.

oh, sweetie. i don't know. i wish i had some sort of bright lifeline to throw your way.
i love that you and your husband are in harness, and fighting together to make it all work. i love that despite the terrible strain, you're in it for the long haul. i love that you're looking for ways to make it all bearable, not to make it go away.
the only thing i can think of is to look into some sort of respite care. an afternoon off won't stave off the underlying exhaustion, but any break in the constant pressure has got to help.
good for you for figuring out date night. that in itself has got be a feat.
sending you strength. {{{{}}}}
khairete
S.

Sounds like you are great parents, and a great couple.
I think maybe what you are feeling is despair. I remember thinking maybe I had depression once, and saw a great doctor who said "No, you have despair. I would too". And it changed how I dealt with it. He said just accept life as it was because not a thing I could do to change it for time being, and just find ways to be good to myself. I think I just gave myself permission to feel that it was hard. It's natural to feel that way. I certainly would find your situation challenging. We went through having a child who had special needs and then we had my health deteriorate and you're supposed to still be the parent you want to be, and the spouse you want to be. Well, when you're coping it's hard to be everything you want to be. Sometimes getting through is hard enough. The love is there and the support is there in your family - you can tell. You just are going through a rough patch. I do think it gets easier. It tends to get worse before it does though - so maybe that's where you are. I was told that you all adjust over time, and even if things don't really change, they seem easier because you've all accepted things and that's the hardest part sometimes.
One thing that helps my family - so I'll throw it out there - is taking off on short notice on a weekend afternoon. No matter how tired, stressed, etc. we all - we say we're getting in car in 10 minutes and we go on a short trip within a hour or so away. We go see a sight, go apple picking, something different. It takes us out of our rut. The kids actually like each other again if we're trying something new, and my husband and I chat up front and it's two hours total of us just catching up. It does us a world of good. One kid grabs snacks, etc. and you just go - we keep eyes/ears open for local stuff going on. When you come back, problems don't seem as big.

My kids are a 19 yo step daughter who is moderately retarded from brain damage (vaccination as toddler), my 16 yo daughter who has ADD/Asperger's and my 13 yo son who is ADHD. My husband and I have been together for 8 years, married for 6.

I get it. With my SD we always said she was a full time job in herself. Not only did she go to school, but had OT, PT, music therapy and speech therapy....weekly. It is very stressful on a marriage for sure. Most marriages with SN kids don't last. My husband had his daughter full time when I met him because his ex had a nervous breakdown and walked away. Now because of a F'd up court system, she has her full time and we rarely see or talk to her anymore, but that's another story.

I'm not sure how "special" your child is? Does he get state services? If so, take advantage of the respite hours. Our daughter had a wonderful care provider that would take her to the mall to help socialize her and spent hours working with her to learn things she needed to. It was a break for us and we definitely needed it.

Not sure if this would work in your house but our rule when the kids were younger was they all had to be in their rooms by 8pm (and they still kind of do this). Showers started at 730 and they were done by 8. They didn't' have to sleep but they just had to stay in there. They didn't have TV's or electronics other than stereos/radio (they STILL don't) but they would read, play, listen to music, color, whatever. Then when I went to bed I would go around and make sure the lights, music, etc was off and they were tucked in and asleep. The point of this was time for me and my husband to talk, watch tv, do a few chores, do other things....without the constant disruption from the kids. And it also seemed the house was never really "clean". And no one really cared. We all kept up with as best as we could but now that they are older and can do more, it's kept up much better. It's just at the time we could only do so much and the people IN the house was the priority, not the dirt in the house...if that makes sense. It was never disgusting, people came over and I wasn't embarrassed but I didn't stress if the sink was full or dust on the bookcase.

I'm glad you see the priority of each other. It's so easy to keep going and going and you get burned out. Please don't let that happen. I know everyone's path is different but it helps to know others who are going through the same things. I wish you the best and hope you find something to give you some peace.

Sending you hugs. It must be so hard and I can only imagine what it must be like for you.

Growing up, my mom had a needle point picture that said "if all of our troubles were hung on the line, you would take yours and I would take mine". I often in life think of this. Although I am not raising a special needs child, my special needs child died when he was 17 days old (he had severe brain abnormalities) so 14 years later I still have baggage from that. I am also recovering form 2 major surgeries in the last year. I will be 8 weeks post op on Tuesday but my physical therapist still thinks it will be months before I can drive again. Life right now is so hard but I try to remember it could be worse.

Hang in there. A lot of getting through life is your attitude. Easier said then done, I know, I haven't had a day that I don't cry in months but I am trying.😊

I think you as a couple need some caregiver support.
There are support groups and you'll be able to talk to people who are going though the same issues as you are.

http://www.care.com/special-needs-special-needs-support-g...

I have no experience to share in terms of raising a special needs child, however I just wanted to send good wishes, revitalizing energy, and support through the electrons. I applaud that you and your spouse are doing the teamwork, fully invested, and taking some time occasionally to see each other. The suggestions for respite care sound really good, and I hope you can find that resource in your area. One day at a time!

Updated

I have no experience to share in terms of raising a special needs child, however I just wanted to send good wishes, revitalizing energy, and support through the electrons. I applaud that you and your spouse are doing the teamwork, fully invested, and taking some time occasionally to see each other. The suggestions for respite care sound really good, and I hope you can find that resource in your area. One day at a time!

Updated

I have no experience to share in terms of raising a special needs child, however I just wanted to send good wishes, revitalizing energy, and support through the electrons. I applaud that you and your spouse are doing the teamwork, fully invested, and taking some time occasionally to see each other. The suggestions for respite care sound really good, and I hope you can find that resource in your area. One day at a time!

Can I suggest that you call your state offices and find out if there is any respite care funds available?

In Oklahoma they used to come through OASIS but then the state took them over and of course that made it much more complicated and took longer for the checks to get to the people that watched the kids for us.

We got $300 every 4 months or $400 every 3 months. I simply can't remember which for sure.

We "hired" a care giver when we needed someone to watch our grand kids. There is also a division that is specifically funded and for families with special needs children. When that caregiver was done we put down how many hours they'd watched the kids and filled in the amount we wanted them to have out of our funds. Then that person signed the bottom and put their information in the appropriate places.

Then we would mail the form in. In a few days, when OASIS handled it, that person would get a check in the mail for that amount. When the state took it over it was a couple of weeks or longer. But they eventually got the check for the full amount.

They were responsible for paying their own taxes or anything they needed to do. They were contract labor and they were paid the full amount owed, any amount within our funds that is.

If we paid them the full amount we had in there then we weren't able to pay anyone else any money.

We paid a L. from church to watch our boy every Wednesday so I could go volunteer, my husband couldn't keep up with the boy and this L. was amazing with him. We paid her $20 or $30 for 4 hours depending on if we took food for them or not. At her home.

When we took both grand kids over we paid her $30 or $40, again, if we took food with the kids and brought enough for her to eat too we paid her less.

Anyway, there should be funding available for you to have where you can get some respite care for all the kids.

Life with young kids takes up all your energy and leaves you empty and needing sleep. This isn't a recipe for a quality relationship. Hubby and I are strong, but man, I feel very little connection to him. Last night he çame home at 7:30. Kids went to bed at 8, 8:30, and 9. I passed out at 8:30 because toddler had me up at 4:30. I feel like i haven't seen my hubby in months, and we do date night monthly, and once a week we try to spend time together, but we are still in the thick of it.

I'm hopeful that when the youngest is 3 or 4 it gets better. Right now it's just hard.