Autism Community: "One Day We’ll Die and What We’re Doing About It" (Sugey One)
So, yes, for many of us, with some luck we’re going to get really old, our kids that require almost 24/7 caretaking will be ok, and we’ll outlive them by a day or two. Or, maybe not. Either way, we’re going to need help, and we have a partial solution we’re building for ourselves that many of you, my readers, might be interested to know more about. Jump to the end if you want to find out how to connect directly. You may know my wife and I from our 2014 Oscar qualified film The United States of Autism, which has now played in over 75 countries, and many thousands every year still stream it around the world. We donated a large portion of every local screening proceeds from the showings, we battled congressman and senators in Q&A’s, and we donated copies to many libraries around America, all on almost no budget. But despite all that impact, we came to understand in our own personal life, if we want our son to live the most comfortable life by aging in place, how are we going to accomplish this as we become older and may need help ourselves? So, we sat down and listed out all the things we would need help with as we age.
The Real Problems We Face
Know where he is day or night (help with wandering). Check. Daily living reminders (executive function) for getting dressed, toiletries, medicine, eating, sleeping. Check. Complete privacy so no one at Amazon, Facebook, Comcast, Google, or anywhere else can hack in and see what goes on in my home. Check. Then, it got really complex. Preparing food. Cleaning the house. Talking to him when he’s upset or he injured himself and we’re not around. Adjusting water temperatures and faucets, making sure the ovens don’t burn down the house, even closing the refrigerator. All these things are something Rosie from the Jetsons would do. Which gave us an idea. We at Sugey decided to start building a Home Artificial Intelligence called The Sugey One, and do this ourselves if the market wouldn't listen.
How it Works (and Help You Sleep Better)
The camera systems are placed at the exits of your house first, maybe one in the individuals's bedroom as well and anywhere else you'd like to track (kitchen, playroom), and are able to recognize people during day or pitch black night and track them around the home. The Sugey One camera sensors also have voice activation and speakers! These allow us to notify someone if a person wanders out of the home who is not supposed to, either by text or by telling the person in the house via speakers . It will also track simple behaviors like eating and sleeping intially. So, in summary, you’ll have a few private cameras placed around the home that will help you mitigate wandering (maybe help you sleep better), and help keep track of daily living tasks and store information for any future records (like times people wake up so you can tell if people may be sick or depressed). You have to start small when building artificial intelligence hardware. Large companies spend millions of dollars, and we, well, we don’t. However, we’ve made tremendous progress (blowing the pants off of the big companies I might add) focusing on these two areas, wandering and daily living. We find these are the top two concerns and we focus heavily on it in the present, while planning ahead for all the potential unique things people will need in the future. Lastly, the collected data is managed privately, and we have a unique hardware setup to make sure all the camera images are private as well.
The biggest gotcha is that when we pitch investors on what we’re doing, often they come back to us with two problems.
- The market is too small
- You don’t have the backing
That’s right, shockingly I know, people telling us there’s no money for autism support.
The Way Forward
So, we’re reaching out to individuals who may be interested in what we’re doing, to show that something like this is needed for people like you as you age, and you’re worth developing awesome products for. If you’re interested, here are some ways to participate.
- Show of Support: We’re taking fully refundable, no obligation $100 deposits with letters of intent to show our investors people are interested in something like this. Contact us with your email address, and we’ll send you the quick form to review.
- Team Development: So, we have a small and mighty team, but we are always looking for early contributors looking to put in sweat equity. Are you good at hardware building? Artificial Intelligence or Machine Learning? Casing? Sales and business development? Come talk to us.
- Open to Angels: If you’re interested in making a huge impact (and potentially a large sum of money as the same time), contact us and we’d love to start a conversation. We’re pursuing multiple opportunities in our seed round and are happy to talk!
So, When Do We Get Rosie?
The fact is, Rosie is going to be a bit away. But that kind of technology is something we at Sugey are building towards in the future. We see a system that will not only help now, but one day make it possible for us to breathe a little easier as we get older ourselves. We’re our own customers, and know the kinds of things that could help, but we’re also listening. Feel free to contact us, we'd love to hear how we can help, and we’re wishing you the best as we move forward in life. Thanks, The Sugey Team
Thank you, Hera. I used to think that if C. were bored enough, she'd pick up something and do it, but she never has and still doesn't. I know she's depressed, I'm depressed too. She has Medicaid (I don't have insurance, nor did she until she was accepted for Medicaid after a year waiting for it once she turned 18). But what could a psychologist or psychiatrist do? Her verbal skills are better then they were five years ago, but nowhere nearly good enough to talk about her experiences and her feelings. She can say Good or Not that much. And I greatly mistrust all psychotropic drugs, and I think all of the drugs for depression not only usually don't work but often cause suicidal or homicidal urgings which are sometimes acted upon. And I don't think it's depression solely caused by a chemical imbalance, but rather situational. She's worried about her future and has little to do in the present.
I'll try to give her more chores around the house. She cooks a lot and is careful and does great presentation. She took the trash out to the curb last night for pickup today. She cleans the cats' litter boxes very responsibly and carefully, every night. She can do the laundry and carry the dry laundry upstairs. On grocery day I carry the bags of groceries in and put them on the steps going upstairs, and she carries them to the kitchen and puts them away, something I think I couldn't even do anymore, putting frozen things in the freezer right away before the cats open the frozen chicken. I just saw her bathroom counter was dirty and thought I could tell her to clean it with paper towels as a regular job.
We're about to move into the volunteering stage of her pre-employment program. It has to be at a non-profit agency. We're having a meeting tomorrow to talk about it, I think the only possibilities, and they're the same for all these young people, are the Humane Society, the Food Bank, and, I suggested yesterday, casting about for non-profit groups, Habitat for Humanity. The person working with us in this program said she worked extremely well and accurately, even helping another volunteer who was having problems, for an hour and a half straight at the Food Bank and the library (which said it doesn't need any more volunteers for at least the next ten years).
Thank you for your suggestions. I'll let you know how it goes.
Posted by: Cia | October 23, 2019 at 12:30 PM
it sounds like this is a very hard situation for both your daughter and you. I'm sorry for you both. And it sounds like you are both doing the best you can to keep her entertained, and looking for a better long term solution.
Just some thoughts, then on boredom. My Mom is a very practical woman; since we were small, her response to complaints of boredom was to say, well if you are going to be bored anyway, you might as well do chores and make good use of the time..laundry, cleaning the house, dusting, whatever needed doing. She raised kids who could almost always find something to do that was more interesting than scrubbing the floor.
Similarly, everyone has to learn how to handle their own boredom. Anyone holding down a job is going to be bored at times. Anyone living at home with no work will be bored sometimes too. An aunt used to say that if you were down, depressed or bored, then the best thing to do is try and find someone else to help with something. Perhaps it is not always your job to fix your daughters boredom at all? maybe she needs to learn how to experience it and deal with it for herself? It sounds like you have provided plenty of things; books, movies, art supplies, excursions, to try and help( on a side note video games work well at our house, and some online ones provide interaction as well,but that depends on her interests) ; maybe though, handling boredom for herself is an art your daughter needs to develop? A teacher I knew who was very good at teaching math would often agree with his students when they said it was boring. He would say; yep, this is boring. Definitely is. And we are all going to have to learn it anyway...
I think there is a book somewhere called the gift of boredom? I haven't read it yet, though I mean to, , but wonder if it might also be of interest to you?
( Also, perhaps it would might be worth going to a doctor just to check for depression etc ?) None of this is medical or psychological advice, ( please get that from a doctor/psychologist) This is just a different layman/friends perspective, and I hope that over time you get a better living situation that works better for both of you.
Posted by: Hera | October 22, 2019 at 06:17 PM
Thank you, Grace. I'm very tired and don't know when it's ever going to end. No rest but in the grave, as they used to say.
Posted by: Cia | October 22, 2019 at 05:24 PM
I'm exhausted just reading your comment! But yes, you're probably right about the autistic problem - the incapability of an original idea. It didn't put me in a good place for my music composition degree.
Posted by: Grace Green | October 22, 2019 at 10:21 AM
Thank you, Grace. I was teaching her to crochet, which I hadn't done in decades. There is a knitting/crochet group that meets at the library in the evening which I think she would enjoy both for the skill and the social interaction, but I have poor night vision and can't drive at night. So far she can't do it on her own at all, she'll do it for a few minutes then hand it back to me for a few minutes. A scarf that we're changing the colors on every three rows. I've been having serious problems with MS (vaccine mercury/aluminum poisoning in reality) and we haven't worked on it for over a month. (I've been doing the Exley Fiji water treatment for two weeks, but it causes extremely severe mercury/aluminum attacks, I'm not going to take it any more until after our trip: does anyone know anything about this? I guess it's because it pulls out so much aluminum and mercury and a lot just stays in circulation? Would going to one one-liter bottle of Fiji every other day be better?) I'm getting Amy's crochet kits in the mail every month, but all of them will have to wait until she's better at it. And the general Amy's crafts kits for girls as well.
She likes to cook and makes most of our meals now. She'll make Billy's Mother's Chicken this evening, from the Healing for Little Tummies cookbook (for GFCF and grain-free diets, of which we have dozens). She made a baked pumpkin pudding yesterday from the Felicity (American Girl) cookbook. I gave her the first Felicity book and a book I LOVED when I was in second grade, If You Lived in Colonial Times, Ann McGovern, and suggested she read them on her own, that if she could get to enjoy reading (and she was hyperlexic when she was five, knew how to read without formal instruction, but I don't know, something missing in comprehension), she'd never be bored again. She has stacks of magazines under her bed which she's never read, Catster, an animal mag for children, American Girl, Spider, Ladybug. Big board books of Bible stories she wanted to keep. We got sweet potatoes and apples for her to make a casserole with. But all of this takes maybe an hour or two and then she's back to boredom. We have literally hundreds of interesting books bought over twenty years for every age level, artistic coloring books for well-known fairy tales, activity books, she now puts our (old-fashioned photos using disposable cameras) into photo albums and likes to look at them, she has dozens of VHS tapes and DVDs which she knows how to watch independently, a boxed set of Flipper (we're going to interact with dolphins in Mexico), the Brady Bunch, the Partridge Family, Bewitched, many movies like Frozen, all the Disney movies, the Hunger Games, many Sesame Street and Hamtaro videos (she used to adore hamsters, both live and Zhu Zhu hamsters). She has an iPad with games on it (she begged for it for months, ONLY to watch an app in which Curious George's Birthday Surprise is read), we have a piano that I gave her lessons on for five years, a lap harp with music to put under the strings to show how to play well-known songs, we have two cats she adores and got Halloween toys for them, a pumpkin wand toy and a ghost catnip toy. I paid for her and her outings person to go to the Budweiser Clydesdale ranch (the caregiver LOVED it, but my daughter said it was all right, but she didn't like it much), I gave her money to buy something in the gift shop and she bought a mother horse and colt with a brush and paints, and she did a beautiful job painting them. We put them on our Halloween/Sawhain/Day of the Dead altar and will leave them through Christmas (manger scene). She'd like to go trick or treating forever, but last year was just too hard for me, and I told her when she graduated from high school, she'd have to change to sitting at the door to distribute candy instead. We're going to watch a mildly Halloween movie called Monster Squad. She's going to a Best Buddies Halloween party on Friday in an old Incantasia the Witch costume. I told her I'm just not up to carving a pumpkin, but am laboriously putting pin pricks around designs of a raven and the word Nevermore, to stencil onto our pumpkin with a black Sharpie. She drew stunning large pictures of our two cats, the one of our tabby is intricately detailed and I don't know how she did it, which I've framed but will need help hanging on the wall. (I gave her a very complete art set several years ago with several tablets of paper.) I suggested she draw our parakeet (she hates our dog), and she sort of agreed, but hasn't done it or anything else. We're going to MEXICO soon for ---- sake, I bought her a snorkel set and fins, beaches, Cancún, hotel on the beach, the Maya Museum (she says she likes museums, at least the idea) and El Rey, glass-bottomed boat tour of the MUSA statues on the sea bottom and a speed boat ride, Wet 'n Wild, Maya cuisine, we read The Corn Grows Ripe to prepare her and several books on the Maya, Mayan ruins everywhere, Crococún zoo with only Yucatán animals, including many babies to feed, Xcaret eco park including a Sea Trek on the bottom with an oxygen helmet and sting rays all around, two days there, Gran Cenote, Playa Paraíso, a hotel room in a hut on the beach with a ceiling fan and mosquito net, no electricity, a guided tour of Dos Ojos Cenote, shaking hands with a dolphin at Dolphin Adventure and also feed a manatee, snorkel at an easy coral reef with tropical fish at Akumal, Yal Ku, a guided jungle tour and Maya float at the Biosfera Sian Ka'an, a guided tour of Punta Laguna monkey jungle with spider and howler monkeys in their natural habitat, Chichén Itzá including the sound and light show the night before and Ik Kil cenote. This has been an imprudently expensive trip, we'll see if my health allows me to get through it and she enjoys it. Heat brings on symptoms in me, so we're going when it's as cool as it ever gets. Eighties Fahrenheit. I wish I could have found someone to go with us, but I couldn't. We'll spend a week in Mexico City first, we went there once before and she loved it, we stay with friends I used to live with there, we'll go to the zoo in Chapultepec (I wrote and she memorized a presentation on the pandas there in Spanish for her Spanish class last year) and row a boat on a lake there. La Feria just closed permanently because two boys were killed on a roller coaster there a few weeks ago: we had been going to go there. So now I hope my friends will take her and some teen-aged relatives to Six Flags Mexico, which she loved last year.
And she still says So what else have you ever done for me? (not quite that coherently)
I just don't know if this is a common aspect of autism or not, to be completely unable to think Why don't I...? That would be fun, or interesting, or useful.
Posted by: Cia | October 21, 2019 at 12:32 PM
Really sorry to hear about your daughter's present predicament. We in our family have all had the same problem to varying degrees of wanting social activity but not being able to find it very often. Our best solution has been hobbies that you can do on your own - gardening, walking, sewing, painting etc. - I don't know what C. likes or is good at, but I hope you find something to fill the gap soon. And good luck with the apartment, it sounds great.
Posted by: Grace Green | October 21, 2019 at 08:40 AM
My daughter is going nuts since she graduated from high school in May and we finished home schooling in July. I have been having significant health problems, and she is extremely lonely and depressed, even though a women paid by the state is taking her out to do fun things twice a week (I pay for the costs of what they actually do, the state pays her a salary and for gasoline, etc.) She's going to a Best Buddies Halloween party on Friday. She went swimming last week. We went to an incipient open air museum last week, went to paint clay figures which were fired in a kiln a few weeks ago, have eaten out several times, gone for ice cream, go to Mass on Sunday, she's cooking a lot. But nothing is enough and she lies with a pillow over her head a lot of the time, or stands in the door of my bedroom without saying anything, last night for an hour. I've told her that no one gets to go out and do fun things every day, but that's what she wants. It sounds as though this system were meant to operate without human input, but is that the best situation for autistic people? Any people? My daughter LOVES activity and being around cheerful, friendly people. The women yesterday showed me pics on her cell phone of my daughter jumping joyfully on trampolines and going through an obstacle course. She looked very, very happy. But as soon as she got home, back to being glum and depressed. She cannot entertain herself at all. A house in which everything was done for her but she was alone would leave her in despair.
Posted by: Cia | October 20, 2019 at 07:12 PM
Here there is government-sponsored housing for the disabled, including the autistic. Two months ago it suddenly became a lot harder to get it, because of the explosion of the disabled seeking it. Yeah, for the last fifteen years, all the years these kids have been in public school the authorities just kept telling themselves, There's been no real increase. Just better diagnosing. So at any minute, whatever used to happen in the past that kicked in and enabled such kids to go to college and get a job and an apartment is going to kick in as it always has. No problem. What? Problem? Well, OBVIOUSLY, it's fraud. They aren't REALLY disabled. And it suddenly got a LOT harder to qualify for Medicaid. We actually got SSI in just a couple of months after the interview. Yeah, $771 a month. Taxpayers' dollars. Tough luck, taxpayer. You fiddle while Rome burns, and this is what you get. We're negotiating for the housing now, and they agree that we're in a potential big crisis between her autism and my MS (both from vaccine damage). But apparently sooner or later, my daughter will get the apartment. Yeah, the government at whatever level will have to pay $100,000 a year just for the housing, per person. Do I care? You ruined my daughter's life, I hope you burn.... But it's just half a mile from here down a residential street, several two-bedroom apartments all in the same building with a living room, kitchen, bathroom, washer, and drier, and sliding glass doors (wired to alert if there's a breakout) to a back stoop (on the ground floor), with woods behind. One or more 24/7 caretakers always available to help and cheer up. A van to take the residents to where they need or want to go.
So exciting. Watching the furor over the trillions of dollars that Medicare for all would cost is amusing. Wait until the taxpayer finds out about the trillions he's going to have to pay for the damage resulting from his credulousness and indifference, and he doesn't even get health care out of it.
Posted by: Cia | October 19, 2019 at 02:28 PM
I would market this also to people caring for elderly with early dementia such as family members.
Posted by: Carolyn McSad | October 19, 2019 at 12:47 PM