We need a section just for the parents of profoundly autistic people

Want to meet? Where?
I'm planning to have role playing card games at my house with the idea that people like my adult ASD son will have fun while parents of people like my son hang out and decide we can all do some cool things together. Businesses, housing, inventions, or play Rock Band or Mario Kart while mulling over stuff.

It's your board if you love your child (of all ages!) with autism and need to explore better ways for you, your family.
It's your board if you love your child with asperger syndrome (of all ages!) and need to explore better ways for your child.
It's your board if you are on the autism spectrum and want more in life, want to move onward and upward and forward.
It's your board if you like being a care giver but have ideas to make the job so much more of a life enhancing, fun, fullfilling vocation.
It's your board if you are employed by agencies who work with people with autism, see better ways and don't know how to make them happen without rocking the boat.
It's your board if you think it's cool to hang out with an autism spectrum community.

If it makes no sense, add to the instructions or ask questions. Everyone deserves to be able to join a message board! Well, everyone except those sleazy spambots who show up in the dead of night, knocking on the membership door, hoping to look like regular people. 

So here's my attempt at trying to make log in sense

Welcome, Guest. Please login or register.
 l________l l_________l Forever
Login with username, password and session length

The above image is on the message board at the top (almost). The image doesn't look exactly like that but I'm not geeky enough to figure out how to copy it. The first box is for the name you choose after you register. The next box is for the password.

Below is more prompts. Don't be afraid to click on anything. That's who you find out what you can do.

HOME HELP SEARCH PROFILE MY MESSAGES MEMBERS LOGIN (or logout if you happened to be registered and logged in.)

When you click on register, you get asked a bunch of questions to make sure that you're not some uwelcome spammy spammer but one of pure heart who merely wants to join this humble message board. Follow instructions, you will have to choose a name and a password and you will be registered!!

Once you are registiered, go to Home and log-in! Don't use your email address as a way to log in. Use that chosen name you gave when you resistered. Important! If you use spaces or capital letters, you have to make sure that you always use them with your chosen name. Then use the password that you chose. If you forgot your password, somewhere is a prompt that tells you to put in your email address and your password will be sent to you.

I was driving past, yet again, another little development with a row of new houses standing empty and unsold. Builders, banks and real estate people own them. They don't want to own them. A bunch of us could buy them, you know.

Our ASD community has regular incomes from disabilities. We have care givers who would have regular jobs from those regular incomes. We could have foster homes with regular incomes where there wouldn't be neighbors who would object to them being there because we'd be our own neighbors! We could have family members and care givers buying some of the houses and sharing the load. The incomes aren't enough when we go it alone but together, as a community, we are rich!

How many lawnmowers does on need for one street of homes?
How great would a community vegetable garden be?
How often does someone really need a truck, or a car, or a van? One for each house or for each community?
Community means you have neighbors who might know how to play guitars and sing, while you know how to play the drums so have at it.
Community means that when you need a cup of oatmeal, you don't have to jump into your car and run to the store. You can ask your neighbor. Save and pool your resources.

I'm picturing finding a real estate agency, finding the builders who are stuck with the houses, finding a mortgage bank, finding mentors who know how to do this stuff and then sending out the word to the ADS community and the DD community, in general and tell them that there is a vacant street where we're having a huge open house and brainstorming session.

We started this message board because we need to find others who want to work together for change. Ha! Change is the word of the day lately.. I caved into my ASD phobias and got too overwhelmed to keep the board going but I'm back and now I have ATTITUDE!

I'm just charging ahead and saying what needs to be said. Come on, people, join us! Your ideas are may be so crazy they made just work!

Next month is some kind of ASO housing conference. In addition, the legislature is going to tackle group homes and foster homes and caregiver problems.
 
So I've been reading what DD groups and agencies are thinking up to deal with problems. It seems like more big brother reporting of abuses, nothing to make caregivers feel good about what they do. Caregivers need to feel good about their jobs, the people they take care of, their coworkers and bosses. They need to have hope and not be in a tail spin about how they're barely getting by. The state doesn't really want to pay them all that much so I'm trying to be creative. Happy caregivers mean happy residents. So when I go to that housing conference and listen to all the old tried and failed and tried again projects, I want to have some kind of a business plan that I can pass around and network with like minded people.
 
Here's a list I started for what I would do for caregivers if I was a part of a corporation running group homes or foster homes. Any feedback or fixing or adding is appreciated!
 
Real Life Solutions Care Givers
Triple A style services whenever we can do it, not too
far away, 4 times a year. Rides, battery jumps,
tinkering to see if car can be fixed by support staff
on hand. No towing unless we happen to have a tow
truck driver in our group.
House sitting twice a year – someone to watch
residence, water plants, pet care while caregiver is
gone.
Themed foster homes and group homes, whatever matches
the care givers’ and residents’ passions and styles.
Art, music, farming, theatre, sewing, hiking, service
dog training…..
Second hand depot – we work together to have an Ebay
style store, bring in stuff to sell or trade with each
other and save the money for an agreed upon thing.
Brainstorming meetings to discuss how to make things
better.
A community garden. Land for growing produce. A place
for chickens where available. Or dairy animals.
All money saved from state provided funds gets put
back into making better homes. This isn’t for the
owners to make money. This is for the homes to be good
community-minded supportive life-enhancing places.
Caregivers can bring nice mellow dogs to work with
them.

We have talked about a lot of little cottage industries. A little publishing company. A food preparation company that caters to special diets. Anything with animal training... I'd love it!

But mostly, we're envisioning that the community is very good at retreats. There'd be retreat facilities on site. We'd manage them, whether it's a music camp, one week and a medical retreat or dental retreat at other times.

We also want families who need respite to get to know us and feel good about leaving their kids with us when they need a break. Or just coming to the retreat together and having lots of fun together without feeling embarrassed or apologetic.

Maybe we could come up with realistic training session retreats for agency people and teachers. Somebody needs to come up with realistic solutions.

We need to consider buying a place in the spring of next year. The housing prices are supposed to really drop then,

I met a lady who raises service dogs for autistic kids. She said she raises golden retrievers and labs and says that they are used so that the autistic kid has a social connection, like a friend with the dog. So she raises quiet, well behaved dogs that can go into classrooms.

It wouldn't have mattered whether my daughter had a dog with her in the classroom or not. What my daughter liked best about dogs, even if she didn't bond with them, was to hold the leash and watch people be predictable. They would socialize with the dog. She liked that because it was like a safe socialization for her. I'm trying to teach the dog I have now to go after her and push against her until she takes the leash. I'm doing this so that if she runs off when we're on a walk or hiking, the dog will chase after her and keep nagging her to take the leash.

So that's the kind of service dog training I need, not the quiet pile of fluff sleeping at her feet. If she bonded with another dog, though, she'd probably want him or her lying beside her.

Don't worry about my policy. You are a very realistic person. I'm still a little, maybe, bitter about how much parents around us wouldn't face reality and just kept thinking that their kids would be cured someday. I couldn't be friends with them because some of the stuff that they were buying into was nuts.

As for dentistry, I'm finding out a lot. I'll get more into it after I talk to a few key people next week.

One more thing about dentistry which makes me wish that DAN! and CAN and Autism Speaks would do is to court parents whoses kids are grown and ask them what they would do if they could go back in time. It would be a wake up call for those blinded parents who won't see their real kids but imagine that the real kid they love is hidden inside their autistic kids.

I wish so badly that I could turn back the clock and aggressively keep my daughter's teeth well cared for. I was born with teeth that I neglected forever as a kid and young adult. They stayed in good shape. When my daughter fought me about brushing her teeth, I didn't brush her teeth very often. I didn't understand the significance of her discolored teeth until it was a horrible disaster. I didn't know how bad it was to ignore teeth on some people. It's a guilt I'll have forever.