Nomadic life and dealing with disabilities

[Cajunwolf]

Why isn't there a "Men Only" forum? I don't know about the rest of you, but I could really use somewhere to vent and have someone to talk to myself, and I'm damn sure, not ashamed to ask either.

 

[bullfrog]

We had one a few years back but old men get mean and cantankerous so Bob had to shut it down!

 

[Cajunwolf]

@bullfrog
True, this, and I can understand, I know human nature, but hey, I had to say it, right.

 

[Cajunwolf]

Besides, I have to try, I have no one to talk to, and I'm being advised by not only my doctors but my daughter's doctors and social worker to get her and myself out of this destructive relationship as soon as we can any way we can, but that means throwing a helpless woman on the streets, I can't do that, there has to be another way! I've been trying to make this work for 20 years now, and have had a disabled daughter in the picture for sixteen of those years. Holy crap! I've walked the valley of the shadow of death many times, always because I put myself in a bad situation, I own property down here, and I'm climbing out of the valley one more time, but this has been the most challenging climb of my life, and if I fail my little girl pays the price. A pressure cooker situation, naw, right?

 

[Qxxx]

I don't mean to sound flippant here, but there are probably forums out there that are specifically set up for that, and which have knowledgeable personnel who are trained in such matters.

 

[Qxxx]

old men get mean and cantankerous so Bob had to shut it down!

There is plenty of that even without a special section.

 

[Cajunwolf]

I don't mean to get all emotional and all. Still, I've watched this forum for some time now and decided to join because I want to travel with or near others who have disabilities and challenges like ours. Everybody works together for the benefit of all, sounds corny, doesn't it, but is it? Here's one of my concerns, and I'm throwing it out there because it's a real issue. I'm an old man, and my daughter, because her mother is blowing bubbles, and can't be there for her, needs the influence of women. My goodness, I have no idea how to shop for her underclothes? I have a few older ladies around here, getting fewer, that help out with such things, but I have to pay them. Being that I'm a mechanic, I'd be willing to fix whatever needed fixing on any woman, or couples, vehicle if they'ed help me with shopping for clothes for a 16-year old special needs and autistic daughter. Is there anybody out there who understands what I'm up against here? There is no such thing as a magic wand, believe me, I've looked!

 

[Cajunwolf]

Now, if I've embarrassed myself, I hope there is someone honest enough to tell me so, because that's what I need, a little honesty because I'm so tired of folks blowing fluff up my posterior telling me all is well if you just do this or that, yeah, righttttt ....

 

[Qxxx]

If Dingfelder were around, he could say something relevant, but it seems to me there 2 different issues here. One is a sociological issue that needs professional guidance, and the other is what we deal more with on this forum, which are the practicalities of living cheap in vehicles. To me the former requires professional attention and not just amateur opinions. Way beyond my boundaries.

 

[BuckleBrown]

Besides, I have to try, I have no one to talk to, and I'm being advised by not only my doctors but my daughter's doctors and social worker to get her and myself out of this destructive relationship as soon as we can any way we can, but that means throwing a helpless woman on the streets, I can't do that, there has to be another way! I've been trying to make this work for 20 years now, and have had a disabled daughter in the picture for sixteen of those years. Holy crap! I've walked the valley of the shadow of death many times, always because I put myself in a bad situation, I own property down here, and I'm climbing out of the valley one more time, but this has been the most challenging climb of my life, and if I fail my little girl pays the price. A pressure cooker situation, naw, right?

I can't do anything but applaud your courage and determination.  Parents (good ones) are the most important  part of society. I unfortunately took the " cowards" way and decided early on that I couldn't meet that challenge. I know the rewards of parenting are great but so is the possible loss. I knew that I would rather lose nothing than lose everything. And now... thats all I have...nothing.. as deep as your valley may be at least it has purpose.

 

[badmotorscooter]

Well, all four of my kids are grown up and I am divorced with my 28 year old daughter living with me in a very strained relationship (among other issues).

I'm no expert, but do have some experience. If you need someone for a sounding board or moral support, you can hit me up and I'll try to help.

Right now my situation isn't the best, but I'm sticking it out to make sure all of our chickens and other pets are taken care of and live out a full and happy life.

 

[Cajunwolf]

@badmotorscooter

Yeah, you get it, thanks, and it's a combination of moral support and knowing I'm not alone in this challenge. That helps a lot, and it goes both ways. I'm the only real father, Sarah's mother's daughter, my stepdaughter, mother of my grandson, has, and she is in her 30s and has some real issues too. But that's another story for another time. Life is complicated, no one promised us a rose garden; if they did, they were lying their ass off.

@Qxxx
More "professional help" is the last thing I need, that's an oxymoron. Your conversation, opinions, the fact you plunged right in, honestly, helps a lot, thanks. I bet you're a real hoot around the campfire.

@BuckleBrown
Dude, your way too hard on yourself, everybody has a purpose and there is a purpose for everybody, you've been a really honest friend so far, hope I'm returning the favor.

Thanks, guys, the feedback feels good.

 

[Qxxx]

Just to make it clear, I wasn't suggesting you go to a psychiatrist, rather talk with someone who is experienced in dealing with the "practical" side of your situation. It's obviously all beyond me.

 

[MeiraNomadRN]

Can women reply to this thread? Lol

CajunWolf, I really enjoy your posts and I’m impressed with your thoughtful care of your granddaughter. If the spirit moves you, please feel free to message me — I’m pretty compassionate and can deal with a surprising amount of ‘venting’ before my eyes glaze over ;o)

And if we are ever in proximity, I will gladly take your granddaughter underwear shopping for free or barter.

 

[wagoneer]

We have had some requests /attempts for a Men:s Room. Just never took off. Dont know why.

 

[swlands]

Aw crap. OK, honesty is good, but reality is best. The reality is you are fine. It is your daughter that needs the help. What would be great is if your daughter had her own support system. And as you get older that will become more true. While living in an RV may solve some problems it is not an option for your daughter without you (i think?) People are amazing in a crisis but when problems unfold incrementally we usually suck. You and your daughter are dealing with a tough incremental situation. What usually happens is something breaks and then everyone gets covered in shit. Sometimes that breaking is you. I am not blaming, I am just observing. I have no clue about your daughters specific challenges or capabilities. At 16 she needs to start taking over self care - which includes making friends and building support. As a parent our job is to open doors.

What I liked most about your posts here is you want some women friends for your daughter. I think that might have been hard to ask for, but really, it is what she needs. I am willing to bet that when the shit isn't flying she has some great stories, probably is a great story, and so are you.

What Bob did that is so amazing was not live cheaply in an RV. He recognized people dealing with issues and shared their solutions to challenging situations. He values people, and makes them heroes on his YouTube. What makes the internet so amazing is one person can talk to the whole world and Bob started collecting people stories who live in RV's. Now he has over 300K subscribers.

I think you are in a good place here. I think your gut instincts are spot on. Yes, you do need some recognition, but what you really need is for your daughter to have a life.

Another thing I would worry about is people taking advantage of your daughter, or you. Hey - you are a grown up and if someone takes advantage you can probably get over it. But at 16 it is still a skill to learn. In truth I don't think people ever master this skill. And with special needs it may be your daughter is better at it than you know - I can't see from here. It is all about establishing boundaries, and recognizing boundaries, and when we appreciate boundaries life is amazing. When we recognize others limits, and our own limits, we are finally seen and it can be beautiful.

What is missing for me is your daughter. She still needs protection. I approve of you wanting to get some women in her life.

Feedback from another father. FYI my daughter is amazing - mid 30's and killing it in life. When she turned 30 I wrote her saying I quit being her "dad" as she is smarter than me, she has outgrown me, and I let her go. I am still her father, and I adore her, but she had a huge circle of excellent friends who knew her better than me. I think that note just confused the hell out of her - I heard she talked to my siblings about it. But right there you can see I was right - she knew who to ask and went right to it. I bet your daughter is smart too. Smart is knowing how to get through the day.

 

[jacqueg]

Why isn't there a "Men Only" forum? I don't know about the rest of you, but I could really use somewhere to vent and have someone to talk to myself, and I'm damn sure, not ashamed to ask either.

I know there used to be a "Men's Room" thread somewhere. I think it died from lack of interest.

Or maybe it's still there, and has dropped off the front page because no one has posted there in a while.

 

[WanderingRose]

Here's one of my concerns, and I'm throwing it out there because it's a real issue. I'm an old man, and my daughter, because her mother is blowing bubbles, and can't be there for her, needs the influence of women. My goodness, I have no idea how to shop for her underclothes? I have a few older ladies around here, getting fewer, that help out with such things, but I have to pay them. Being that I'm a mechanic, I'd be willing to fix whatever needed fixing on any woman, or couples, vehicle if they'ed help me with shopping for clothes for a 16-year old special needs and autistic daughter. Is there anybody out there who understands what I'm up against here? There is no such thing as a magic wand, believe me, I've looked!

No magic wand, sorry. If there was, I’d not only have used it myself but patented and marketed it.

Your 16 year old daughter with special needs would be in special education programming at school, and that would be a good place to begin asking for some assistance on areas outside your body of knowledge.

She already has a network of providers, you just may not know how to access them

Start with the school social worker, who should be able to link you with resources in the community who can help a dad on his own with a disabled adolescent daughter.

Good luck to you.

 

[Cajunwolf]

@maki2
I didn't post in the women's forum, I saw the thread about "WOMEN ONLY: Men Are Posting In This Forum?" and trying to be respectful of the women-only forum, created a thread of my own asking why there wasn't a men-only forum too. Then something I've needed to do, vent, ask for help, suggestions, and emotions just came out because I'm hoping I'm in the right place. I'm sorry about the "dude" thing, okay? I was speaking directly @BuckleBrown. Look, I'm just an older man form a different time, and I'm just not up on all of this new political correctness, a lot of us aren't, darn I didn't mean anything by it. I was born in 1953, okay?

@swlands
Thank you for the time and thoughts; that was helpful. Let me add a couple of things about Sarah, and you'll see why I'm beyond all of the support groups and such. Sarah had a brain injury at birth from Listeria meningitis, which caused hydrocephalus. She has a shunt that drains the cranial fluid into the abdomen, you can't see it though. The shunt failed several times as they do while a child is growing; we almost lost her one time. After that one, she was in a wheelchair for the longest time. Working with her neurologist, we targeted atrophied muscles in her legs with Botox injections. With patience and determination, I got her out of that wheelchair and walking, not good, but she can do it. She loves going to the store and pushing the basket. She goes everywhere with me, and her pediatric psychologists told me that's the best thing for her as old as she is. You see, Sarah can't talk, she and I can communicate just fine, but many things she did made me think there was an autism thing going on. All the "esteemed" doctors kept saying it was the brain damage. Finally, after browbeating, her primary care doctor got her in to see both a pediatric psychologists and psychiatrists, both concurring on broad-spectrum autism. Still, by this time, she was 12-years old, too late for any type of therapy or group. It was me taking her with me everywhere, letting her experience the world, and people that do the most good, and I see improvements daily. She's not retarded, quite the opposite, but she will be like a child, mentally, most of her life, but that's not written in stone. She also wears adult diapers, holy crap, right?

@MeiraNomadRN
Actually, I probably need more responses from women than men, with men, it's the other married and single fathers who help out too, they understand what raising kids are like, I've several myself beside Sarah and two step kids also. And it's not just the underclothes thing is just all the things a young girl needs to learn from her mother or women, and she needs that, we don't have it where we're at anymore. What few friends I have along with a couple of family members who give a crap, they're all behind me on this one. We can go see and stay with them; we have our house with us, no burden, no motels. Thank you for your support.

 

[Cajunwolf]

@WanderingRose

She's been through the wringer of special needs schools and social workers, her social worker for her primary care doctor and her doctor are behind me because they can see the improvement in Sarah's cognitive abilities over time. The brain is plastic in that it self repairs, makes new connections around the damage, and life experiences shape the brain to make the new connections. This is how the brain doctors explain it to me.