The hoopla over the Big Birthday, my 65th, is over. The next big birthday is Angelic Daughter’s 30th, which is coming up in 2025.
The plan for my first year or two of retirement is to focus on helping autistic Angelic Daughter develop her independent living skills. The goal is to move her into her own safe, supported independent living situation while I’m still walking and talking.
But the first hurdle, and it’s a big one, toward developing Angelic Daughter’s independent living skills is convincing her that she needs them.
Which means I must somehow help her understand that Mom won’t be here forever to take care of her, without terrifying and traumatizing her.
As if it wasn’t enough losing her father, my husband Mike, her stay-at-home-Dad, best friend, boon companion, chef, chauffeur, tandem-bike operator and Director of Entertainment when she was only 21, he died on the night of her first day of her last year of the “transition” program at her high school. That program was supposed to help her prepare for living independently as an adult. It failed her spectacularly. Perhaps because she was one of the least difficult young adults in the program, they pretty much ignored her and let her slide.
Nevertheless, even in her grief and confusion about her father’s absence, she learned how to take a train and a bus to a day program more than 20 miles away three days a week (which many parents of her neurotypical peers have told me their kids couldn’t do), and how to take the paratransit bus to and from two part time jobs two days a week, locking the door behind her, and how to get the lunch I had left for her from the fridge, and how to keep herself safe until I got home from work.
Then came the crushing isolation of the pandemic, which derailed progress for so many children and young adults, both neurotypical and neurodiverse, including Angelic Daughter. During that time home with just me, all the noise about the death toll, the danger, the masks, the sanitizers, and the monumental losses, seeped into and converged on her and I watched as it started to dawn on her that if Dad could get sick and die, then Mom……
Her reaction to that was to help and to hover: to clean glass and wood and unload the dishwasher and vacuum, and then sit on the couch waiting for me to take two fifteen minute breaks from my work-from-home job and to get “lunch from out” or to sit with her for lunch at home. Then dinner and “music time” after I finished my evening workout in the basement.
Second only to losing and missing Mike and the heartbreak of watching her miss him and slowly realize he was never coming back, was knowing that I alone must launch her into a bigger, scarier world–a world without me.
Because her plan was to live with me in our house forever. And now I have to help her understand that nothing in this world is forever.
I have to help her realize that just like Dad, both sets of grandparents, her great aunt, two cats and at least half a dozen horses she has ridden and loved, Mom also would one day be gone from this world.
And I have to watch her move through fear and sadness and anxiety and denial and nightmares and tears until she’s ready to accept the necessity of learning how to be more self-sufficient, all while trying to keep my own composure and not break down bawling when I think of what her future could be like if I fail to launch her while I’m still able.
Is it appallingly selfish of me to want to be sure she is settled, safe, happy, not lonely, and has friends and things to do within the next two years, so I can live out the rest of my life with the peace of mind of knowing that she’ll be OK?
For now, we’ve agreed to take it one day at a time, learning one task and three special meals a month until she has mastered them and we can move on to the next things. I’ll just pray (and ask you to pray for me) that I stay strong and healthy and clearheaded enough to get it done with a few good years left over for me to enjoy (selfish bitch that I am, I hear my inner voice saying).
But I keep reminding myself that parents, whether their kids are neurotypical or neurodiverse, really only have one job, and that’s to make it possible for their children to survive without them.
Focusing on that one job for the foreseeable future, I remain,
your fending-off-panic-and-despair, trying-to-maintain-a-positive-outlook-for-Angelic-Daughter-and-myself, taking-it-one-day-at-a-time-and-praying-a-lot,
Ridiculouswoman
I am indeed holding you in my prayers and heart as you both step more firmly into your daughter’s need for independence. My husband and I were fortunate to live in NY state where our daughter (38 today!) finally was accepted into a Community Habilitation program. This means she lives in her own apartment (low income housing, utilities mostly paid for), had regular staff to take her out and about in the community , doctor appointments, and generally support and advise her. She chose to be able to delegate her allotted monies from Federal Government and state funds to hire her support people at a rate she wanted and to pay for any public classes or events to involve her into the community. In NY state it is OPWDD (office for persons with developmental disabilities) that is administered by county agencies. She moved to farther upstate and we had to get her involved with a new organization with new parameters in this new county and all was chaotic for 2 years. Then Covid and no employees available to work with her to finally she now has two people and almost all of her allotted support hours are met. She is well cared for for the first time in years.
Ohio is not NY and I am sure you have investigated everything that is out there for your daughter. Should my daughter need to move to Ohio to be near to her sister when I am gone, they will have to navigate an entirely new system. Daunting.
But with your strong advocacy I am sure you will find the very best you can. My husband died 6 years ago and still my daughter feels she has not, mourned him completely. Her sister is a generous, hardworking professor and mother of two little boys herself. They both know they will need to find a balanced working relationship and strive towards doing that every year with as much goodwill as both can muster. I so wish you strength, perseverance ,and good fortune as the path unfolds.
❤️We have a similar, if not as well developed, system in Illinois, with a state appointed agency for each region to help. We can put Angelic Daughter on a list for subsidized housing and are free to reject options if they don’t meet her needs. Like your daughter’s situatiin, it is very difficult to find personal support workers, and that’s one of the things that worried me most-finding trustworthy people who truly care about her to provide the kind of help your daughter now has. Thanks for the prayers and wish me luck!
Thinking of you and your daughter!