On a waitlist and feeling lost: a usable map

It is 11 at night. You have 14 browser tabs open. One is a waitlist form. One is an article about a therapy you can't pronounce. One is a search you typed and did not send because the words felt too big. What do I do now?

If that is you, you are not behind and you are not failing. You are lost. It is a normal place to be, because no one built a map for you. Here is one. Not a perfect one, but a usable one. Take the first part tonight. The rest can wait.

Name which kind of lost you are

Feeling lost is information, and there are at least three kinds:

1. No map. You have a diagnosis and a list, and you do not know what the next phone call is.
2. Too many maps. You have services, a pile of paper, and four professionals who each tell you something a little different.
3. The map does not match the ground. You did everything the map said, and life at home is not noticeably different.

None of these mean you are doing it wrong. Each is a gap in the system, and the stress lands on you. Take a piece of paper, write "I'm lost because" at the top, finish the sentence, and write the date. In three months you will want to see what changed. Lost feels permanent. A dated page proves it is not.

A parent who is lost in a system that has no front door is accurately describing the system.

Sort what is on fire

When everything feels urgent, nothing gets done. Divide a clean page into four boxes: fire, this month, this year, someday. Fire is narrow. It is not "hard" or "unfair." It is safety: a child leaving without you knowing, violence in the house, food refusal that worries the doctors, someone not sleeping at all, or losing housing, power or a job.

Work on one fire at a time. For each one, ask: what is the very next phone call or email, who can actually do something, and what do I need in my hand before I call? Then do only that. Not the plan. The next call. And if the list takes more than 20 minutes, stop. A rough sort you use beats a perfect one you do not.

Plan for the worst day before it comes

If anyone is in immediate danger, call 911. If you or someone in your house is in an emotional or behavioral crisis, 988 is the suicide and crisis lifeline, by call, text or chat, 24 hours a day. A 988 counselor may not be trained in autism, which is why you should be ready to explain.

Write a one page crisis sheet and keep it on the fridge, in your phone and by the door: your child's name, age and a recent picture, how they communicate, what they do when overwhelmed, what helps, what makes it worse, medical needs, and anything a stranger would not guess, like whether they run toward water. When you call, start with: "My child is autistic. This is what a crisis looks like for him." 988 is for you, too.

Three free organizations in every state

• Parent training and information center: rights, meeting prep, letters. Start here for school. Find yours on the "Find Your Center" page at parentcenterhub.com.
• Family to Family Health Information Center: family staffed help with insurance, Medicaid denials and medical systems.
• Protection and advocacy agency (P&A): call if something is wrong at school, in a facility, or with a service meant to protect your child.

Have three sentences ready: your child's age and diagnosis, the one thing you need now, and what you already tried. Then ask, "Who else should I be talking to?" If you get the runaround, ask for a name and a direct line, and ask whether a no can be put in writing.

Treat rest like a medical need

What most of you need is not a bath. It is another competent adult in charge of your child for a few hours so you are not on duty. That is respite. Start with the National Respite Locator run by The Arc National Respite Network (it says its listings are not complete and are not endorsements), your state's lifespan respite program, and, if you are on a waiver or a waitlist, ask your support coordinator how many respite hours you are eligible for. Informal options count too: a relative who learns the routine, a respite swap with another family. Start with one hour and build.

Your one page plan

1. "I am lost because," dated.
2. Your one fire, and the next call.
3. Which of the three organizations you will call first.
4. Your crisis sheet: written yet?
5. One hour of someone else in charge in the next 14 days. Name the person and the day.
6. Which waiting lists you are on and are not. Call one.
7. One question for your child's team, sent this week.

Review it every Sunday for 20 minutes. You will miss a week. Do not start over, just move the unfinished items. A plan you return to is better than one you abandon.

Ashleigh Dominguez, MS, BCBA, is licensed in North Carolina, Georgia, and Iowa. This article is general education based on the episode. It is not clinical, legal, or treatment advice for your child or your state. Corrections and sources are listed in the YouTube description.