Thriving Support Systems LLC

01/20/2024

Making some changes in my life, moving towards running my own business again. But this time not for profit. For community.

My end goal is big and important: a residential care facility that supports the entire family for developmental disability services - picture assisted living, but for children's services, so no one has to be separated, not even siblings or foster parents.

Getting there is the journey. Do I go back to college to meet the licensing requirements first? Do I network with other non-profits and risk my goal being co-opted (or white-savior washed?)? Do I start Kickstarter funds? Or do I start my own non-profit site and work my way up with resources like a "100 days of autism" guide, neurodiversity style? Or do I start with practical services and open a drop-in inclusive child care center (there are none within 200 miles of me)?

I've been waiting a year and haven't started. I need to move forward somehow.

Photo offering for the algorithm gods. I'm not sure if this quote is accredited correctly, it's from Pinterest.

Photo description: parchment paper with typewriter font text reading 'In the end only three things matter: how much you loved, how gently you lived, and how gracefully you let go of things not meant for you. -Buddha'.

11/13/2023

Don't let arbitrary holiday memes and expectations, no matter how well-intentioned, create guilt for you and how your family lives.

Last year I saw this meme. I tried. I tried so hard. I thought that if I was just "good enough" I'd be able to do these things.

Last year we had lost my son's in-home caregiver, the state was getting ready to lay me off, my husband lost his job. Just keeping my kids out of the hospital was a day to day struggle, let alone the burden of creating "an experience" for my family.

My kids remember it as a GOOD yuletide and solstice (we don't celebrate Christmas).

06/25/2023

SB 91 passed the house today. Is on its way to the governors desk.

I'm so grateful I'm in tears. 35 years of advocacy led to this moment. 35 years. That's longer than I've been alive.

05/19/2023

One of the most successful disability interventions ended May 11th.

Children have already been lost to foster care, families are homeless, many people are pushed into overcrowded and inadequate residential care, and more.

This program saved my family, and we will not be able to stay above water without it. Please help.

CMS Keep Parents & Spouses As Paid Caregivers For Those With Disabilities. 577 signatures are still needed!

02/16/2023

Disabled people deserve the care they *want*

I remember posting a funny video about my pa (personal assistant) helping me shave my vag. It was wild how many people were commenting saying that shaving is an extra that I didn’t NEED and I shouldn’t have my pa do that.

Imagine telling a nondisabled person they can’t go to Dunkin every day before work because they don’t NEED it.

The care of disabled people by government and state institutions is characterized by what non disabled people arbitrarily deem is a need for a disabled person to live their lives. It’s obvious that bathing, eating, changing, doc apts, medication administration, etc. is a *need*

What about other things that vary from person to person based on *preference*? What if I want to spend an hour doing my hair everyday? Or is that type of autonomy only for nondisabled folks to experience?

Did you know there are group homes where disabled folks like myself have to live because they don’t have access to resources to live on their own where they have a bedtime & are told when they can and can’t eat or go somewhere?

Did you know a state paid caregiver is not allowed to travel out of state with a client on a vacation?

It horrifies me that there’s this overwhelming level of complacency that places the livelihood, happiness, and independence in the hands of the services we have to succumb to.

Just getting by is not enough. Disabled people deserve to live the lives they WANT to live and have the same freedoms as nondisabled people — even if that looks like helping me wax every or***ce of my body.

I’m very passionate about this topic, if you couldn’t tell, because disabled people deserve so much more.

07/28/2022

One of the biggest aspects of self-care is learning how to give yourself the things you were never given as a child.
Time to play.
Space to make mistakes.
Permission to be yourself.
Rest.
Safety.
Acceptance.

You deserve all of those things.

07/21/2022

Cw: food