My dream community for Molly

Picture this: An aesthetically beautiful, safe, productive campus community for our adults with special needs to live....forever. A place that they can call home so that when we, their parents, are gone they still feel like they are home as they don't have to move. They ARE home. A community that they can enter upon graduating from high school (or after their transition programs which end when they turn 21). Or whenever it feels like the right time to move out from under their parents' roof. Each individual will have a different time line for this of course.

I was invited to a brain storming session with representation from TRE (The Resource Exchange), NTSOC (Nursing and Therapy Services of Colorado), Cheyenne Village, Mosaic, along with a few other parents. What I learned was disheartening (but not surprising) in that we as parents have a limited number of options for our kids if we want them to move out from our protective care and have support. The more severe kids (like mine) will need 24/7 supervision. There are others that will need less support. What I learned in our meeting was that every family has their own specific vision for their kids and yet there are only a couple options to choose from. 1) Your loved one moves into a "Host home". Paid families that take in our "kids" and treat them like a family member. 2) They move into an apartment or house that is shared with one or two or three others with daily/up to weekly supervision from Cheyenne Village. OR someone lives with them in that apartment or house. There might be a number of these apartments within the same complex, but they are not their own community as such. (And the fear that rises up in me is that there are potentially a lot of not very good people that live in that same complex, who could harm my vulnerable daughter). That's it. Those are our choices. Neither screams community nor fulfilling job opportunity either.  The most disheartening stat that I was told was that due to the institutions from long ago, laws have been made that limit how many special needs people can live together. So a group home environment is no longer easy to create. I need to research the laws on this and will report back when I know more.

Last night I got this email from a parent who has been trying for years to build momentum for a community for their adult daughter. Their vision is exactly my vision and she phrased it beautifully.

Becky Caldwell from Hilltop Ranch's vision: "When we consider the MANY options that we’ve researched and visited in and out of state (group homes, host families, co-housing, community settings, etc.), we continue to hope for and work towards a campus community setting that along with housing for our loved ones with disabilities, would include extras such as a community center, on-campus businesses, gardens, etc.   We’d like to include housing for others as well – homes for parents who may wish to be part of this community, accommodations for students training in special education, etc."

I'd like to add a little to her vision. Like every teenager that heads off to college, I think that the dorm experience is a great first step option. Let our kids experience sharing a room, sharing a bathroom at the end of a hall, let them learn rules that are imposed from the RA's on their hall. Another option would be an apartment and then ultimately a free standing home. Let them migrate through life's stages just like we did. Could we have all of these options on our campus? Of course we can as I'm fantasizing about it right now! Molly would be put together with a roommate to start and as she migrates through the system, year after year, hopefully she is bonding with a few other women and they can choose to be roommates, apartment mates, housemates etc. I'm sure there will be folks that fall in love and can be given the option of dating, marrying, moving in together etc. My mind just went a little crazy thinking about THAT with Molly! (I will preface that I'm not considering the medically fragile folks or the ones with severe behavior problems in my vision here. They would most certainly need more support than this vision offers.)

On campus we'd have a bakery (a place that they can learn food service skills), an organic garden (where they learn to farm, provide food for the community and sell at markets), a recycle place (to earn money for the community but also to teach/learn a real skill), and maybe even a car wash or laundry facility? If we could have all of these options on site, we don't have to navigate transportation issues (how to get to and from work across town when you don't drive and live in a community with terrible public transportation like we do in Colorado Springs). We could partner with all of the local school districts to provide for the transition job trainings. High school kids could come and try out each model to see what a good fit for them might be so that when they graduate, they are trained and ready. And might even want to move on campus now!

We could partner with the University of Colorado at Colorado Springs, Colorado College, and Pikes Peak Community College with their undergraduate and graduate programs in Special Ed, OT, PT, speech therapy, etc. These students could live in our community with reduced housing costs in trade for living on dorm, doing internships with the community etc.

Meals would be shared together in a dining hall. I picture my boarding school experience where some nights of the week it's cafeteria style and you sit with those that you choose. Other nights of the week is family style sit down meals where you sit down at the same time and "pass the potato's please". You are assigned tables so that you meet others and get to know others in your community. Everyone shares to the best of their abilities in the food process. You can help make the meals, or clean up afterwards, or serve the meals. There is a place for everyone to help and participate and socialize. Family members that have chosen to live on campus in their own separate home can head up a table and be a part of the community. Having family members involved lowers the possibilities of neglect and abuse happening, like what occurred in the institutions of old (or even some of the current nursing home horror stories we hear about).

Ok, so I guess I really am picturing my idyllic boarding school life; but instead of prep school, college bound kids, the community is adults with varying disabilities. I want Molly surrounded by her friends with Down Syndrome as they are happy and positive and talkative. I want her to have her friends with autism who use "talkers" too and are focused and OCD as a lot of shit gets done with those kids. Maybe not always the most helpful shit....but they are focused :) We have tried to include our kids with the mainstream kids throughout their lives and their typical peers have been wonderful. But the bottom line is that we ALL want to be around people who are like us. And even if the law says that our kids shouldn't live with too many others like themselves .....I think that that is where they are the happiest. It would be a lot of fun creating this dynamic, functional campus community for adults with disabilities.

C'mon now! Don't ask how it's funded. You are being too practical during my fantasizing stage. We can worry about that later :)

"Tornado Bell" is Molly's new nick name.

"What job will Molly have when she graduates from high school?" is the question that we have not had an answer for.....until maybe now!! Brooke and I were able to go tour a job training site where Molly will be participating this year, starting at 4 hours a week and working up to 10 hours during the school day. Woodland Park Middle School hosts a community recycle program where people can bring their old computers, printers, TV's, etc and drop them off for a small fee. The high school kids, similar to Molly in their disabilities (though they all were verbal), take them apart, sort them, and then ship them off to the places that need recycled parts.

 When Molly arrives, she goes straight to her work station where she has a bin with her name on it. In the bin are her tools: pink gloves, protective eye wear, and her own screwdriver.

 Here is a motherboard and the end product of her efforts of demolition the day before. It is ready to be shipped off. They showed me this and I felt immediately grateful for all the smart people out there who put it together in the first place. Y'all have different brains than I do!

Step one: use screwdriver to unscrew the 4 corners. Her fine motor skills did ok. I was surprised!

Her pile from the day before.

Clearly marked boxes for the various recycled parts.

 Once you get the top off, there are lots of different little pieces that can be pulled off and recycled from batteries to screws to lots of things that this mom doesn't have a word for. Next time I go observe, I'll write them down! What was impressive was to see the other high school students who have been working there for a few years. They were very patient with Molly in training her. Shelbie had a computer in front of her and would model one slow step at a time what Molly needed to do on her computer in front of her. If Molly needed help (which she did almost every step of the way since this was only her second day), Shelbie would lean over and help her by muscling off a part. She remained calm and encouraging. Molly remained totally focused and intrigued. Brooke and I kept looking at each other with excitement as for the first time we saw the possibility for Molly in a work environment!

We were told that this type of job is perfect for kids with autism. They are very methodical, don't get bored with repetition (they actually thrive on it), they don't have to socially engage and talk with people and it's very visual (instead of auditory).

Donations

TV's that will be sent to another facility for recycle. There are hazardous products in TV's that our kids can't be exposed to.

Molly was focused. Molly was happy. Molly could DO this! Once she got the steps down, she'd be able to do this all by herself. They were even letting her use an electric screwdriver and she was managing that after a few attempts. Since Molly LOVES to sort like items and put them in their correct bins, she was thrilled by that step in the process after they had taken apart all that they were going to do that day. Then they put the various piles of like items into their bins. Her smile was huge and full of pride! We are starting to wonder if we need to lock up our computer at night for fear that she will start dismantling it while we sleep :)


You can imagine my glee when I got notes home yesterday that they nick named her "Tornado Bell" as she took apart 2 computers and 6 media drives. She has only worked there 6 days so far. Is Hurricane Bell next?

My friend Shirley

I have been keeping a little secret from you all since August. A secret that I now want to share as this relationship has been such a blessing to me. Per usual, I was perusing FB in July and saw a post from a local teacher asking if we knew anyone that might want to help her 91 year old mother a few hours a week when they moved her out to Colorado from New Hampshire to live with them. I was intrigued by the flexibility and hadn't figured out what my next steps along the career path were going to be...so I threw in my hat and private messaged Betsey. "I'm interested but would like to meet your mom first  to see if she likes me. (B: But REALLY to see if I liked her)."

We hit it off immediately! Shirley is a pleasure to share my time with and I can only aspire to be as fun when I am 91 years old! She suffers from neuropothies in both feet, which has her mostly wheel chair bound. She only needs me for preparing both b'fast and lunch and a little light housework. When I arrive at 10 am, she is dressed and ready to start her day. Her hair is done, she sports a smart scarf tied around her neck, and some days has lipstick on. That's more than I can say for myself! She remarks that she still is getting out of bed every day and for that she is grateful.

I look forward to my first hour with Shirley. I make her b'fast (yummy walnut toast with peanut butter, or cereal with fruit, her daily prune juice, coffee with milk...and I always to make her an "egg in the hole" on Thursdays.) Then I get to sit down and share conversations while she eats. She is a story teller and I am her best audience. I LOVE hearing the stories of her youth. She told me of her "naked camp" where her mother busted she and her brother and a couple neighbor kids sharing a picnic in the woods while derobed. She is animated in her story telling the way my grandmother "Tammy" was. She uses such great expressions similar to others of that generation. Her body goes into character as she mimes the front desk lady at a fancy hotel on one of her travels to Europe with her husband. She sits up tall in her wheelchair, mimes the straightening of her bow tie, and imitates whatever accent of the person speaking. Her southern drawl makes me laugh. Her story doesn't even need to be good to have me enthralled with how animated her face and body language are. She slumps over in her chair, hangs her head, closes her eyes, and flops her arms to portray all the old people in the nursing home where she stayed briefly before moving to Colorado. She cracks me up.

I'm constantly surprised by what comes out of Shirley's mouth. Throughout my youth, I probably have stereotyped the elderly as stuffy and clueless. As I near 50, I suddenly can relate more to someone in their 90's than the teens of now. Not only do her words surprise, me but her actions do too. Shirley TEXTS!! Shirley uses an iPad. Shirley can navigate the "on demand" section of a TV which STILL confuses me. As I was leaving the house one day, she was Face Timing a friend! She is sharper than I am (by far) and I love her for it. She remembers so many details of her life. The only way that's going to happen for me is by rereading my blogs when I'm her age (if I even make it that long).

Shirley has mostly been housebound for the last 8-10 years when her husband declined into dementia. After decades of worldly travel for both his work and for golf fun, his dementia kept them at home in New Hampshire for his last years. When he passed away this last March at 94 years old, their daughters started figuring out what was a good next step for Shirley when the nursing home wasn't a good fit. I'm SO glad that they all decided to move her to Colorado.

I know this next phase will be upon my family at some point. That day when you decide if you can handle living with your parents again? Or your in-laws? I put myself in Betsey's (the daughter) shoes and imagine living with my mother after 40 plus years of not being under the same roof. It can't be easy for either of them. Each has their own way of living, and eating, and being. To now merge that could be disastrous but I have admired how both ladies are trying to make it work.

Shirley has all day to sit and think about her next meal and how delicious dinner is going to be. Betsey has been at work all day teaching and coaching and often probably just wants cereal for dinner. I am certainly guilty of that on more than 200 occasions. Betsey is following the Paleo diet. Shirley has had a regular food routine for years ( for example: Monday night: chicken, Tuesday night: seafood, Wednesday night: vegetarian....etc). Meat every night was not cutting it. Shirley would have my mouth watering as she describes her favorite recipes. Being a New England girl she was craving scallops. Then it was Lamb shanks. She'd save recipes from the paper then show me how delicious something looked. I finally suggested that on one of the days that I was with her that we could prepare a dinner. We would plan the meal on Monday and then I'd pick up the groceries before I came on Wednesday. She loved the idea and we have made a few meals since. She is very particular about certain things. "No green whatsoever on the iceberg lettuce" on her sandwich. (She sounds like my son). Vegetables need to be cooked perfectly (not under or over). She'd need to tell me exactly how long as I'm not sure what the perfect time is myself? We have had fun talking about the meals and then chopping and preparing dinner together. It makes me realize that I need to engage my family in more group preparation for dinners as everyone thinks a meal tastes better when they have been part of the process. I know Molly would love to be more involved in the kitchen, so I need to relax into the process, know that it will take longer, and make cooking fun!

I have been dying to get Shirley out of the house for the last 3 months. She is very content to stay in the home all day every day doing the NY Times cross word, reading the paper, watching her Korean subtitled movies (which totally cracks me up. Where did she even FIND that on Netflicks?). She has lived a life of travel, golf, and fun and seems content to stay in her daughters home. I picture a "Thema and Louise" getaway and have been asking her for months what she might want to do: go to the movies? go out to lunch? go for a drive? She is nervous about leaving home as it's a bit of an ordeal as the house isn't easily wheelchair accessible going in or out. A little maneuvering has to happen to get her into the car. We have had experience with this with both my grandmother Tammy after her stroke as well as my brother David after his TBI...so I am not deterred by her excuses. You can imagine just how thrilled I was when last night she agreed to come to our house for dinner!! I bribed her with a shrimp scampi recipe I knew that she wanted to try and her daughter and son-in-law were out of town for the night, so she needed a little help if she wanted to eat. When she said "Yes" that she'd come to dinner at our house, I almost fainted.

We got her to our house, had a yummy dinner, got her almost back into her house afterwards when lo and frigging behold, she stood up to let Brooke maneuver the wheelchair up a precarious section of the yard after which she would sit back down in the chair....and she twisted her ankle. Today it is swollen. I feel SO guilty! It was my bright idea to get her out and she hurts herself. I hope she will give us another chance as we loved having her over.

After we dropped her back at her house and were driving home, Brooke said "I see why you love Shirley. She is SO sharp and interesting". He was blown away when she talked knowledgeably about Ultimate Frisbee. Most sports minded men don't know about Ultimate much less a cute 91 year old lady :)

If I could find a few other women just like Shirley, I could totally see being a full time home health care worker. She makes my job feel fulfilling, she has modeled how I want to be when I am her age, she makes me laugh, and I feel blessed. Thank you Shirley for being a part of my life.