There’s a ride at Disneyland that many of us have probably been on – The Haunted Mansion. I loved it from beginning to end, even though the first few times I went on it I was scared (but, you know, in a fun way). I always loved the end of the ride when the projector ghost would show up in your carriage. “Beware of hitch-hiking ghosts!” 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 in the middle. We’d lean into him or pat his head.
So, metaphorically, 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.
*
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. My parents did not exhibit much confidence in me when I moved out, and I’m sure they breathed a sigh of relief when a few months went by and I hadn’t asked them for any money, when it became apparent that I was swimming and not sinking.
Now, 24 years later, it has been six weeks since Neil moved into a supported living apartment, and I am just beginning to exhale. Last year at this same time, he moved into an adult foster home, and within the first two weeks it was obvious that the move had been a huge mistake, that it was entirely the wrong placement for him for a multitude of reasons. He was back home within two months.
So when plans were being made for Neil 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, and he requires assistance. He receives daily support from a local organization called Living Opportunities. They pick him up and take him grocery shopping with his food stamps, they take him to doctor appointments, help him do laundry, and remind 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. He receives “walking around” money in cash every week, and in a couple of months, we may progress to a debit card. He rides his bike to and from his GED class at Goodwill a few times a week and is doing well with that. Once a week I go to his place to make dinner with him or take him to a restaurant, and on Saturdays he comes to the house to spend the night with his family.
Two weeks ago I discovered that he 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.
So after some by-no-means-gentle admonishments, I was relieved when I discovered that he still had some of the decent food that he had bought with me on his first grocery trip. He had plenty of bread and butter for toast. He had cereal and milk, eggs, carrots and apples. So 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.”
*
Neil and I don’t talk every day (per his request), but we do text. And I find that when I go to see him, there is this unspoken understanding between us. He is calmer, content with his autonomy. I am calmer, reclaiming mine for the first time in almost twenty years. There is of course the parent-child connection that will always be there. But there is something else between us. There’s a sense of joint validation that we have come through something together. And while we have a great deal more on this road ahead of us, and at the same time are obviously taking steps in our own directions, that shared experience keeps us connected as we move forward.
I’m sure there will be more debacles similar to the food stamp crisis, more stumbles as he forges his own path. More learning to do. But he will be all right, Twinkies and all.
Tanya I’m so happy for you and for Neil. You are an amazing mother. Your steadfastness in getting him what he needs amazes me every time.
Fabulous! Beautiful! Wow! 🙂
That is so awesome! So happy to hear that for the most part it is working out. I often wonder how my own son will be able to handle living on his own. So happy to hear positive things about living opportunities! Thank you for sharing your story!
Wonderful. Looks like he has some of his mom’s independence. I think it’s great you supported and helped him without bailing him out. I think sometimes in trying to help people end up inadvertently enabling instead. You seem to have a great balance between being supportive and letting him do and learn for himself as he is able.
🙂
My twenty year old son just moved into his own house in April. He works at a gas station one block from his house. He is doing well, paying his bills, and like your son, not necessarily eating the best foods or keeping his house in the best shape. But he is also happy and learning a lot. It’s been a crazy journey from his diagnosis as “severely autistic” almost eighteen years ago and his emergence from his own world that started around age fourteen. Good for you for giving your son the gift of independence, of self-determination. I know how hard that is when every instinct is to protect them. Good luck to your son as he navigates this new chapter of his life (and to you, too). <3
I can only pray some day we will be there! Neil I’m pulling for you. Happy for you and your mama!
so great reading this, have been thinking about you guys. this sounds like a great set up, with a nice balance of autonomy and supports, so I hope he is liking the way it’s going. and I hope you’re doing okay, enjoying the space, the change. you: missed.
Tanya,
Parenting is tough, period. In school they teach us so many incredible things that will help us prepare for a future. Reflecting back on my years in education, the one thing that they never prepare us for is parenting, let alone parenting children who have some set-backs that other children, and parents are not faced with. I remember all too well visiting my sons home in Missouri nearly 2 years ago. At 30 something, I still found twinkie wrappers and empty soda cans all over the house. It looked like a war zone and to be honest I never raised him this way, nor was I raised this way. We find our way in life though. I know Neil is growing, in ways that perhaps even you will never understand. You have been through a lot with Neil..and he with you. There will always be some “un-spoken” moments between you two, yet in those moments there will be a great sense of communication. Breath in, enjoy the peace that you have and when and if a storm hits, remember that there will be a time of peace again. I have believed most of my life that when the storms come rolling in that they are in a way Gods way of showing to us that it is time to call on Him..there were two people who walked on water…Jesus..and Peter for a moment. When his eyes and trust were place on Jesus he was able to walk on stormy seas..when he lost sight..he sank!
I am praying for you, your family and I know that there is an incredible bright future out there for all of you!
Learning a lot and growing a lot! That’s really wonderful to read how he is adapting to the new changes in his life. I can’t wait to visit him next month and I can’t wait to see you too!
That is cool! I’m sure the emotions are mixed, bittersweet, but it sounds like you both have a lot to be grateful for!
So happy to hear Neil is settling in and that you have some more space in your life. And I’m proud of you for resisting bailing him out on the food stamps thing; that must have been difficult, but with a great result!
LOL! Well I don’t want to tell a “that is actually pretty typical for a college-aged dude doing his own grocery shopping,” because I know that it IS different in many ways. But I’m pretty sure many of us have had those “probably don’t spend all your grocery money in the first two weeks of the month and maybe you should buy some vegetables” learning experiences! My dad still tells an alarming story of when he was a teenager living with a roommate. They were running low on money and food, but they did have a couple cartons of eggs, so they boiled up the eggs and each ate a dozen for dinner, and boy were they sick afterwards! Maybe you could look for some sort of meal planning website so Neil could plan out some healthy meals and make a list of what to buy, and also figure out how much money he can spend on Jell-O cups and Twinkies! (In my case it would be Dr. Pepper and Kozy Shack flan cups!)
Delightful reading. px
I’m learning a lot too–by reading your and Neil’s journey. Thank you for continuing to write and share your story. I’m so happy that it’s working out and he is enjoying his apartment–and that you are breathing through it all. xo
I am so relieved to hear that you and Neil have worked this living thing out — at least for the present, right? And we know so well that it’s the present that matters. I also love the way you write and express yourself — there’s much in between the lines, I guess, and your calm yet intimate tone speaks volumes. Thank your for giving us this update and keep us posted!