Linky Love
The Search For The Only Ranger Who Was Lost and Not Found - This is quite the tale. Did he walk away or was he killed? This one sticks with you
How Rotating Your Plate Can Make Your Food Taste Better Are you a plate rotator?
I now know what caused my autism - I am hearing a lot about this research study called SPARK
The Secret Mission to Unearth part of a 142 year Study - This is really cool and amazing that this experiment has gone on so long.
I want to preface all this including the title which was a struggle. A friend reached out to me a long time ago and we started a discussion about adults that are neuro diverse especially as it relates to being employed and not living with Mom and Dad. Hey Mom and Dad aren't going to be around forever. These are questions I ask myself a lot as I have a high functioning autistic adult who lives with me. As you will see below, I clearly don't have the answers myself. These are just a few of things I have discovered in my quest for my son to be more independent of me.
Specifically the population I am talking about are higher functioning autistic adults often with co existing conditions . These adults live on the edge of receiving social services and are often because of their higher functioning in several areas less likely to seek social services or qualify for social services unless in a crisis situation. Generally most of these people can complete the majority of their activities of daily living without assistance (ADL's). It usually the behavior/mental health component that the majority of these people need assistance with.
Parents, partners, and relatives are often unpaid caregivers, crisis counselors, social workers for these neurodiverse people. Because they are adults they can live their life anyway they want including unsafely. However, as a parent to an adult who lives in my house I have rules how you live your life in my house.
I think this situation where the quote, "Begin with the end mind" is really important. My son is going to have to eventually live without me so lets do everything we can to make that a successful outcome.
Guardianship/Supported Decision Making/Estate Planning
I am not my son's guardian so that literally means he can make any decision that he wants without my consent. You know what my son isn't good at - talking on the phone, filling out forms, waiting in line, bureaucracy of any kind, and talking about himself. So we are doing a version of Supported Decision a fancy phrase for he allows me to do these tasks for him BUT only at his direction. We have discussed this and these are things he allows me help him do. I have all the power of attorney's. This has made both of our lives easier. Those things I listed are all things that make his anxiety go over the top. My son is totally capable of managing his money and he is learning to be a better advocate for himself. He just doesn't know how to navigate or begin to navigate certain situations. This is a role I could see my younger son taking over for him or even a supportive partner.
Supported Decision Making - good place to start at informing families
Supported Decision Making Agreement
Housing
Over 2 years ago, I attended all kinds of housing meetings. Affordable housing is a hot button issue where I live. My son would like to live on his own. He currently pays me rent. My husband doesn't believe he could live on his own. I think he could with the right kind of roommate or situation.
Partners 4 Housing - is a Washington company that offers roommate matching service for disabled people. I have heard the owner speak many times. I think this could be viable option for many. They are now nationwide. It is pricey but worth the cost especially in looking for a long term living situation with a vulnerable population that has limited options.
Community Homes, Inc -Is also a good resource. They have 7 adult homes in the Bothell/Redmond area and frequently offer classes on housing resources
This is probably the most needed and where most of these neurodiverse people are going to need to access social services in some shape or form. Whether it be section 8 housing, housing vouchers etc. It is a system that is very hard to navigate with very limited housing options. The best advice I have received about housing is don't be looking for it in a crisis situation. Housing wait lists are long like years long.
Employment
My son went through the transition program at his local high school. That was the launching pad he needed. I know that not all transition programs are good but ours was exceptional and it was for higher functioning people. He also received services through DVR. Of all the social service agencies, I thought DVR was perhaps the most helpful to him. He received job coaching which included helping find a job. I actually think all high schoolers and recent grads could use some job coaching. The number one thing my son lacked was what they called the soft skills. He could do the work but he lacked the interpersonal skills and the knowledge of where to begin to look for a job. These things can be taught. I think DVR (Department of Vocational Rehab) when it is a funded agency does a good job of connecting and coaching people to get jobs. Goodwill also has some training programs. My son did several of those. It was very helpful. I don't know if they are doing these classes during Covid.
Secondly I want to say that most autistic people are not employed. My son does work but it is not a living wage job in that he only works 10 hours a week. He does work that you typically see disable people do - janitorial. Not to put that type work down at all but that seems to be the only type of work available to disabled people. Despite all the feel good news stories of disabled people working at big tech companies etc that is the exception not the rule. Oh how my son would LOVE to do that kind of work. However, my son does enjoy his work and the place he works is awesome and accommodating. Over and over I have heard that meaningful work is important and I have to say that is true to my son. He wants to go to work and be productive.
So what do you do in the time of covid and you have a young adult who needs to work. You look for opportunities to volunteer. It is easier for disable people to get a job if they are a known quantity. Having good references is really important and often time volunteering can give you connections. My son did several internships and it was helpful to figure out what he really could do. All of his internships resulted in references.
Places are still hiring. Perhaps look for jobs that take anyone/ low entry jobs.
example - We live in agriculture area and during the summer kids/adults work at the berry processing plant or in the fields picking berries. They basically hire anyone.
microbusinesses - This is a new term I have been hearing and I would like to explore this more with my son.
Goodwill/Job Corp/Conservation Corp are options as well. I heard conservation corp is a good place for neurodiverse people. Yes they are operating during Covid.
How Covid has impacted intellectually disadvantaged workers
In Context
I feel like I need to be completely transparent. My son receives lots of services. He has a job coach for his job. Social Services can be hard to obtain and easily taken away. Depending on having these long term is foolish in my opinion. In Washington state because of lack of taxable income many supports or waivers through the DDA probably will be going away. The cuts could be so deep that they effect those in group homes. Having some contingency plans is important (Arc of King County - Deep Cuts to Medicaid Long Term Supports) Though I heard they aren't going to be quite as deep as predicted. Lastly, supports (government supports) are not given you need to request them so if you don't know what to request that is a problem. Sometimes my best sources of information has been other parents so it is good to belong to support groups. I also have found the ARC to be a great resource.
We also visited the beach below. I don't think we had ever done that. So much driftwood on the beach and lots of little structures made with the driftwood.
The visit wouldn't be complete without visiting the light house
Visit Mesa Autism Geotour - geocaching and autism two things I know a lot about. A geotour is a group of geocaches usually sponsored by a town this one emphasis is on exploring Mesa AZ and is specifically targeted to people with Autism. I think that is cool.
Mesa is the first city be a Autism Certified City.
Inappropriate Thoughts
*** These are thoughts I have as an parent to someone with Autism. These are not all of them and perhaps the most negative ones currently. Thus they are also the most inappropriate and labeled as so.
There is no such thing as a paperwork reduction act when dealing with social security or any other social service agency.
Why make receiving social services so difficult to receive that even able people have difficulty assisting disabled people navigating the systems. That is insanity.
Parents shouldn't be the only people to come up with the solutions for supports for Autism from housing to therapy but 90% of the time they are. Not government but PARENTS. It has become the norm so government has quit investing in solutions. There is a prevailing attitude that parents will figure out it. It is frustrating. I get tired of figuring stuff out.
There have been days in the last year where I have wanted to leave my phone at my house and run away. But adults don't get to run away especially responsible adults. When you are a parent caregiver there are literally no boundaries. There also isn't any real respite.
My son is no Sheldon Cooper or the Good Doctor. If you have met one person with Autism, you have met one person with Autism. The spectrum is wide.
I am linking up with Modern Mrs Darcy's Quick Lit. Check out what everyone else is reading
Happy Easter!!
Here is my rather lame attempt at a tablescape for Easter. Easter snuck up on me. I originally had planned on not putting out zero Easter decor. My kids are older and I don't think care a lot about the decor. However I do like a little decor so I pulled out my Easter stuff and this is what I ended up with.
The eggs are ceramic that I got from the thrift store many moons ago and the bunnies that my husband's mom had collected for him.
