Tanya Savko writes about her experience as the mother of two adult sons, one of whom, Nigel, is autistic, epileptic and bi-polar. Her blog, “Life in the Different Lane”, focuses on her efforts to give her son an independent life. Her writing captures how emotionally grueling it is to compare her experience entering adulthood with her son’s. Tanya writes:
I was 19 years old when I decided to move into my own apartment… I had a roommate, one of my coworkers at the restaurant where I waited tables, and we split the bills. I was also taking a full load of college classes.
Twenty-four years later:
…when plans were being made for Nigel to move into the apartment, there was certainly some amount of concern on everyone’s part. His ever-expanding vocabulary belies him, as his emotional age has plateaued at around age 11 or 12… a local organization called Living Opportunities…(takes) him grocery shopping with his food stamps, … to doctor appointments, helps him do laundry, and reminds him about hygiene and taking his meds. I pay all of his bills out of his Social Security money, for which I am the representative payee.
The transition to assisted living had been neither simple or smooth. Nigel’s first attempt was at a form of group home. It failed for him after two weeks. This new situation, a year later, was not without drama:
...I discovered that (Nigel) had used up a month’s worth of food stamps in two weeks. His support staff only take him to the grocery store and help him through the process, but they do not tell him what or how much to buy. It pained me to see the bottles of an 8-pack of red Gatorade strewn around the living room, along with the empty red Jell-O cups, Chips Ahoy! bags, popsicle wrappers, and yes, a box of Twinkies. God only knows what he bought and consumed that I didn’t see.
Tanya explained the new normal to her son, as so many parents must do to young adults:
I told him that he had to use his weekly cash amount to buy healthy food for dinner instead of craft supplies, Lego, parts of his Halloween costume that he has been planning for four months, and Slurpees.
He seemed to understand. The situation was not dire, and I was not going to bail him out. We are now six days away from his next food stamp payment, and he’s going to make it. Last week when I went to his place for our weekly visit, I asked him how he felt things were going being in his own place, and in his wonderful, inflection-less voice he said, “Well…I’m learning a lot.”
Her post about this transition, however, is really about the commonality of their experiences:
There’s a ride at Disneyland..– The Haunted Mansion… I always loved the end of the ride when the projector ghost would show up in your carriage… the narrator would say. My siblings and friends (and later, my sons) and I would sit as far apart as we could to make room for the ghost… I like to think that we should always leave room for something between us (besides ghosts). Like fun memories. Shared dreams. Phone calls and texts. A strong connection. And love.
In more recent posts, Tanya has been writing about her study of Buddhism and how the philosophy of patience and mindfulness has given her the strength and means to give her son a start toward adulthood.
…. that suffering is a part of life – it’s a universal condition. “Be kind, for everyone you meet is fighting a hard battle…,” In my case, my son’s behavior improved for a while, then became abusive again. It was a huge part of why I pursued having him receive supported living services while moving him into his own apartment. I was getting out of the way, strengthening myself. And it worked.
Tanya is also a novelist, and her latest book, Slip, depicts the life of a father who must confront the reality of entering into a lifetime of caregiving. “When things will never be normal again, you have to find a new normal, and make peace with it, before you can find peace in yourself."
About the Caregiver Blog of the Week Award
The Caregiver Blog of the Week Award will recognize the most outstanding, beautiful, uplifting, painful and/or moving story of the week blogged by a caregiver.
Caregivers are the unsung heroes of our world. Caregivers who not only do the more-than-fulltime work of caregiving but also write and share their experiences with the world deserve to be recognized and honored. Each week our team will sift through the caregiving blogosphere and select a winning blogger, blog or blog post to be honored at CAREGIFTED.ORG. Email us at firstname.lastname@example.org to nominate a Caregiver Blog of the Week.