Ever since my daughter Samantha graduated from Pace University in 2014, I’ve been trying to help her move toward independence by finding her life skills support and vocational training. After filling out mountains of paper work and meeting with well-meaning (but mostly useless) bureaucrats, more than two years have passed and NO HELP has been provided. Over the past few months, I’ve decided to take matters into my own hands. Twice a week for two hours, I work with my daughter on myriad life skills. Neither Samantha nor I are thrilled with this arrangement, but we both agree that it’s better nothing.
“What are you teaching her? Do you have a lesson plan?” My husband asked, sounding hopeful.
Seriously? “No lesson plan.” I smiled. “Usually I wing it.”
When life hurls challenges at me, I share my solutions and break down the problems to help Samantha understand how to take care of herself. It always makes her feel better when I can give examples of how neurotypical people don’t know what to do, become over emotional, and accidentally make the wrong choices. That way my daughter feels less isolated by her disability.
Last week a telephone scammer called my 90 year old mom, pretending to be her grandson Matt. My mother is hard of hearing, and so she believed the fake story about Matt having been in a car accident which injured a pregnant woman (!!) and was in jail, needing Grandma to post bail and begging her not to tell his parents. Luckily, my mom ignored that part and immediately contacted Howard and me. Of course, we called the “court appointed attorney,” for money wiring instructions, and my husband (a real attorney) quickly exposed “Matt’s lawyer” as a fraud. Later that day—after we had spoken with our son in California and knew for sure he was safe—I told Samantha the story. Part of our life skills time was devoted to discussing how she could protect herself from scammers and how some typical scams worked.. Samantha knows never to give out any personal information like her password, social security or credit card number; she knows how to hang up on any stranger who calls wanting to fix her computer or asking her for money for ANY reason. We also discussed the meaning of “bail”—something I hope she never really needs to understand.
While I don’t have a lesson plan, I do have an erasable black board in her room with a check list of tasks divided into daily, weekly, monthly and yearly columns. I usually start our life skills time by asking about the mundane: Has she refilled her drugs, gone to the cleaners and laundromat? Do any shoes or boots need to go to the shoemaker? Samantha can walk around with lopsided heels and holes in her soles without noticing, so often I have her pull a few pairs out of the closet and ask her what she thinks, hoping the habit will stick.
Samantha is also working on making her own doctors’ appointments and—as much as possible—going independently. Our rule is that I go with her the first time to help with the initial paperwork and history; then she goes on “routine” visits alone. My daughter will proudly tell you that she goes to the dentist, dermatologist, internist and, yes, even the gynecologist independently. If there is a medical issue or question about a medication, I always tag along—even if I’m not entirely welcome. Sometimes I need to convince my 26 year old that I’m not treating her like a baby. I remind her that I went with her dad to visit back surgeons, and I went with her twin brother to the cardiologist. Both of them felt better having me along.
“Is it because you always have my back?” Samantha asks, using one of her new, favorite expressions.
“Yes,” I agree. “And two heads are better than one.”
This week we’ve been talking about priorities and commitments. Samantha wants to know how to prioritize family, friends, boyfriends and theater rehearsals. She demands multiple examples and situations. I offer up birthdays, deaths, illnesses and holidays. But it’s impossible to cover this subject in ANY two-hour session, and there are so many exceptions to each rule….
The next subject is the grocery store and finding the best values. We stop at Gristedes’ and I ask her whether we should buy Eggland’s ($5.99) or Shop Rite’s ($3.99) jumbo eggs. Samantha correctly chooses Shop Rite “because Eggland’s cost more.” However, when it’s time to buy Scope mouthwash, there are two sizes—8 ounces and 16 ounces—and my daughter chooses the smaller one because “it costs less, and I’m on a budget.” It takes 15 agonizing minutes to explain why the larger one is a much better value. Listening to me, Samantha’s face is turning red. Clearly, she feels flustered and self-conscious for not understanding. Finally, I point to the red sign saying that the 16 ounce size is 17.6 cents per ounce, 
whereas the 8 ounce bottle costs 27 cents an ounce, and thank goodness she see the light—at least this week.
Stay tuned for next week.
Marguerite Elisofon is a New York City writer and the author of My Picture Perfect Family, a memoir about how her family navigated life with a child on the autistic spectrum before the internet and support groups existed. She also blogs about parenting young adults and disability related issues in The Never Empty Nest. Her writing has been featured in a variety of publications, including Time and NY Metro Parents magazine, and her family’s story has been featured by the NY Post, Fox News, The Daily Mail, and on Jenny McCarthy’s Dirty Sexy Funny radio show. A Vassar graduate, Marguerite was born and raised in New York City, where she still lives with her husband, Howard, in their mostly-empty nest. She is available to speak about a wide variety of issues relating to twins, parenting, and autism. 