It's Tuesday. You don't have to know everything. You just need to know who knows.
If you're raising a child with special needs, or caring for an adult with a chronic illness or special needs, this newsletter is for you. Every Tuesday it offers one true story, one resource worth knowing and one small way to take care of yourself.
Meet your village: The Knower, the woman who knew what came next
A moment for you: Who is your Knower?
Worth knowing: A library of answers you can reach at 10 p.m
Village calendar: Three November dates
A chuckle for the road: Hold Music Bingo
The woman who knew what came next
Last week I told you about the email that started it all: my son Robert, who has developmental disabilities, had seven weeks to find a new home.
Then, on September 24, the phone rang.
The apartment we had been promised wasn't ready. It still smelled so strongly of the previous tenant's cat that the property manager didn't want Robert moving in. She offered another unit on the same floor, same size.
A kind offer. Also a small earthquake. Robert's move date was two weeks away, and every step depended on the one before it. The inspection had to come before the payment, the payment before the move-in, and the move-in before his old lease could end. Changing the apartment could have sent the whole chain back to the start.
That same day, Ms. Stephanie Saunders, Robert's housing specialist with Fairfax County, approved the new unit. The next day, she sent it on for inspection.
She is the Knower in our village.
A Knower answers the question: Who knows something I don't know? A Knower has been where you are going and knows the terrain. She knew which approval had to come first. She knew what the county could do and what it could not. When I asked how the handoff between Robert's old landlord and his new one would work, she didn't guess. She told me exactly how it would happen, so no one was left hanging.
And here is the part I didn't expect. Ms. Saunders also pointed us to Fairfax County's Coordinated Services Planning, a door I didn't know to knock on. That one referral led us to more help with Robert's move-in. (More on that in two weeks.)
Usually, when the road gets confusing, I call one of two trusted advocates. This time, Lucy Beadnell, Chief Advocacy and Policy Officer at The Arc of Northern Virginia, was away on a family vacation, and my other go-to advocate had just retired.
Even Lucy's out-of-office message knew what came next: it pointed me to Jamie Colgin, The Arc's DD Community Resource Navigator. Jamie picked up my request and offered to track down my retired advocate's replacement and get back to me as soon as she heard. That is a Knower, too: someone who doesn't have the answer yet, but knows how to find the person who does.
Here's what I learned: when your usual Knowers aren't available, a new one may already be on your list of phone numbers.
That week, I felt immense relief and gratitude. Ms. Saunders paired a strong work ethic with real compassion, and we felt both.
Most of us don't struggle because we lack effort. Caregiving mothers have effort to spare. We struggle because nobody told us the next step. A Knower hands you the map. She doesn't walk the road for you, but she tells you where it goes.
So here is my challenge for you this week: Can you name your Knower in five seconds? If you can, thank her. If you can't, that's not a failure. That's this week's job.
Thank you, Ms. Saunders, and thank you, Lucy and Jamie.
Who in your life is your Knower? A case manager, a teacher, a neighbor who has been through it, the one mom in the support group who always seems to know the form number? If you have one, send her a note this week. If you don't, whom could you ask to point you to the next step?
Release. Trust. Receive.
A library of answers you can reach at 10 p.m.
Not every Knower is a person you can call during business hours. The Arc of Northern Virginia recently received a $10,000 grant from the Arlington County Medical Society to support 50 educational webinars a year for families and self-advocates. Topics include early intervention, special education and IEPs, Medicaid waivers, Social Security, transition planning, housing and more. Every webinar is recorded and posted to The Arc's YouTube channel, so the answer you need may be waiting for you after the kids are asleep: youtube.com/user/videosatthearcofnova. For handouts, visit the Resource Library on thearcofnova.org.
From The Arc of Northern Virginia. All three are online, on Zoom; register on The Arc's events page.
Thursday, November 12, noon to 1 p.m.: Transition Lunch & Learn.
Monday, November 16, noon to 1 p.m.: Transition Series: Post Secondary Options for Neurodivergent Students.
Wednesday, November 18: Chat with an Attorney about Special Education. A free 45-minute one-on-one meeting with special education attorney Patricia Connally. Register ahead to choose a time.
Find them all at thearcofnova.org/events.
A Chuckle for the road
Anyone else play this game every week? Which square do you hit first? (Mine is always "Disconnected at minute 52." Of course it is.) Hit reply & tell me.
Who has been a Knower for you?
Reply to this email and tell me about them in a few sentences. With your permission, I may share their story in a future issue.
How did we do on this issue?
Loved it | It was okay | Not for me
With hope,
Doreen G. Fulton
Believe in a Ray of Hope
P.S. Forward this to a mother who is drowning in forms. Tell her she doesn't have to know everything. She just needs to know who knows.
Next week: a phone call from Latvia on the Fourth of July, and the words that changed our family forever: "But wait. There is more."
If a friend forwarded this to you, you can join our Ray of Hope Village and get the free Reset Guide at believeinarayofhope.com/reset-guide-signup.