Two years later.....I'm back!!

Looks like it takes the world going COVID/BLM/politics/masks crazy for me to finally close my FB account to get back to blogging! The drama is just too much for this girl who stopped watching the news years ago as the media outlets thrive on drama and I see right through their BS.  To now have drama on my fun "see friends kids and daily lives" FB threads isn't good for my mental wellness....so I deactivated my account. At least until after the elections....and maybe longer? I have to admit that one of my favorite FB features has become the "memory" section that pops up every day (that remind me of Molly stories that I shared that I have already forgotten by the next year). So to be able to look back and recall the baby steps that my girl continues to make, I need to record them here.

So I'm back...2 years later!! This is a theme isn't it?

Molly is now 23 years old. We continue to use the label "non verbal" as she really doesn't have language to communicate with though she DOES have a number of spoken words. Mostly she just repeats what we say instead of actually answering a question or initiating conversation. She still sucks at using her "talker" (augmentative device that she has used since 5th grade). Though the device is handy when we have NO clue what she is trying to convey. Her one word responses help (most of the time).

Today I'm going to give you a few quick pictures of life since last fall.  I'll dive into more in depth stories about how Molly is coping since COVID locked us down and she hasn't been to her day program since March.

Molly loves when her high school friends invite her to see them play college volleyball. She has worn this t-shirt threadbare since then!

Jack finished his first marathon (and probably his last one).

Jack's surprise 21st birthday present. He loved it!

"Cookie" in her Wellspring play production.

Highs school friends home over break take Molly to a movie!

Zoom painting class during Covid.

Another friend took her on a hike and then to Dutch Bros!

Chilling in the hammock

Another way to pass the new "no schedule" schedule.

YAY that the pool has opened! And she can stay in during "Adult swim".

Patiently waiting for Jack to finish that yogurt so she can recycle it :)

Pedicure. Wore the mask but it came off quickly!

So as you can see....there is a lot to fill you in on and I really look forward to writing again. How has Molly handled this weird new unscheduled life? How many meltdowns has she had? How many have I had? ;) How has life been with her brother unexpectedly home since Spring Break? What new OCD's does she have? Hint: my house is VERY clean! If you have questions, please ask as no topic is  off the table! See you again soon!! xo

Molly-isms #autismroadtrip

I get such a kick out of Molly-isms and what makes her so unique. You have heard about her obsessive need to take out the trash, push drawers fully in, make sure the frig has the light on "ice" not "water", bring dirty dishes to the kitchen (that her brother has left somewhere), wipe down toilets with the towels and then rehang the towels (STILL makes me laugh even though it's disgusting). What is interesting is that these OCD's didn't follow her on the trip. Or maybe they did but I was so happy to be away that I didn't notice?

Actually...this just jogged my memory from Jenny's house: any handwritten note or grocery list that was left on the counter was thrown away and I'd hear a baffled Jen thinking she was going senile say "I THOUGHT I left it on the counter......" and I'd have to say "Oh, I bet Molly threw it away"....and lo and behold, it would be in the trash can :)

So here are some photos that I took of my girl along our month long road trip from Colorado, to Wichita, KS, to Springfield, MO, to Branson, MO, to Birmingham, AL, to Augusta, Ga, to Edisto Beach, SC to Pinehurst, NC to Raleigh, NC to Wrightsville Beach, NC to Charlottesville, Va....to home. I counted that we stayed in 14 different houses/hotels or timeshare/beds. Overlapped with 11 dogs and 4 cats: Not my girls favorite thing as any of you hosting us noticed. Here are just a few of the cute, sweet dogs that we met.

Lulu and Millie scared the crap out of Molly :) I thought they were awesome.

Charlie kept bringing toy after toy to try and win Molly over.

Gizmo hung as close to Molly as he could. And she tried to stay in the middle of the pool.

It's almost like Molly is the dog whisperer as they are ALL drawn to her even though she doesn't want to be near them. It's like they want to be THE dog to convert her to "dog lover" status. Sadly, none of them succeeded.


This happened at Jenny's beach house in Wrightsville, Beach, NC. On our last day there she said...."Did you do that on the refrigerator?" I said "Do what? What are you talking about?"  So she showed me this picture of her son Patrick and his buddy that she had taken of them. She said "In all the years that I have been coming to this house (30-ish) I have NEVER seen magnets on this side of the refrigerator." Then she had me go look at it and the pattern was a HUGE upside down heart (that I sadly didn't take a picture of). The day we left her house to drive to Virginia, she texted me the next picture.

1st magnet art creation

Goodbye creation

Here are a couple of other cute ones:

She got TONS of awesome hand-me-downs from Ivie and Kacky and HAD to cut out all the tags.

Gotta keep everything in line!

BEST way to keep my girl happy at a restaurant !

Hope you don't want the crayons back however.

She LOVED that I was copying making her patterns! If there were more chips, we'd still be there!

I forced her out of her comfort zone by being away from home for over a month. She loves to drive and listen to music so that part was easy. She loves oceans, pools and hiking so we made that our priority so that she never got too wacky with the changes. We only had two "melt downs" on our journey which I'll share with you in the next post. When life used to be multiple daily meltdowns....2 in a month of change was REALLY good!!

 I love that her little comfort patterns that you see in these pictures are part of what held her together.

What are your comfort patterns?

Midlife crisis.....the mom version. #autismroadtrip

It's been practically a year since I wrote a blog and I can only attribute the lack of updates to the funk that I fell into when Jack went off to college. You hear about the emptiness when your kids leave, but I felt like since Molly would still be home, it wouldn't get to me.

But it did.

And it took a month long road trip this summer for me to finally start feeling like myself again.

I hate to fall into the "mid life crisis" category but anyone watching me would probably say "that's a classic mid life crisis". Or "is she going through menopause?" (maybe?) or "has she not been taking her anti depressants?" (I still was). I looked at my life and thought "is this IT?" I looked at my marriage and thought "is this IT?" I looked at the last 21 years as a mom and knew what my role was...now that Jack was off to college I thought ..."who AM I?" "What is my role in life?" I gained weight. I drank too much Chardonnay. I watched (too much reality) TV. I didn't coordinate gatherings with friends. I said "No thank you" to invitations. My husband chewed too loudly. I know....I was SO fun to be around!

Seeing Jack go off to college where he thrived both academically and socially gave us such pride. He earned himself a full ride Army ROTC scholarship at CU Boulder where he is taking hard as heck pre med classes as well as getting up at the crack of o'dark thirty for PT trainings 3 mornings a week. When he did the Ranger Challenge, it was 6 days a week of pre dawn workouts! Not your typical fall of freshman year (sleep in, skip classes, hung over) schedule. I know that more alcohol was involved for me at that age! I see my boy become a man and I'm awed by his life choices. He has his head on straight and has more direction than I do currently and I'm much older and wiser. ;) The loss of his fun energy and busy life around our home was definitely felt and greatly missed. Brooke and I lost our social life which was sitting in the stands of Jack's sporting events; an activity that we LOVED! We lost his humor around the home. We lost the one kid who could talk to us. But on the flip (and more positive) side, we had a much cleaner basement and chips and salsa whenever we wanted (Jack's guilty pleasure that is gone in the blink of an eye).

And then there is our beautiful daughter Molly. You know that I go through my highs and lows surrounding her autism. I focus on her successes and try and create a life that is both meaningful and safe. She continues to learn new tasks and new words. With support, I know that she can have a fulfilling life in the right (controlled and protected) environment. We were incredibly blessed with teams of devoted Molly fans throughout her school life. I know that many from her team read this blog and I hope that you all know how much your devotion to her has meant to me/us. She thrived knowing that you all believed in her, that you knew that she was smart despite all of her challenges, and that you accepted her just the way she was but kept gently pushing for more. She ran to the bus every day to take her school/work and came home smiling too. What a gift.

But when a person with a disability turns 21 years old, the school districts are no longer in charge of their services. No more IEP (Individualized Education Plan) meetings that we have had since she was 3 years old. No one overseeing her programs anymore (yikes....is that ME now?) No one holding our hands and directing us through the maze of life with a disability. Now a local state funded agency The Resource Exchange (TRE) will kick in to support Molly in her adulthood. They are funding her day program at Foundations for Successful Living (FSL) where Molly has gone 4 days a week during her transition program from the high school where she graduated. Here she is trained on work skills, communication skills, life skills (like money and cooking), she interacts with her peers, she volunteers in the community and she gets exercise at the YMCA or on hikes in the local parks. We have loved this program for her and look forward to another year of support through FSL.

Back to my mid life crisis.

Molly turned 21 in February and luckily the school districts finish out the academic year before saying "Buh Bye". She has basically been in school year round since she was 3 years old as she has qualified for summer school (so that she wouldn't lose learned skills). And that life has made me very stir crazy.....I like travel. I like seeing new places. I like seeing old friends. I needed to get.away.from.my.life. And the loud chewing. And the projects around the house that I have stared at and fantasized about completing for years but we haven't been able to afford to do. I couldn't look past them any more and obsessed about them. The crumbs on the counter in an otherwise clean kitchen made me crazy. Cooking every single night. I was sick of my life the way it was and needed a break. Y'all....I KNOW but I'm just being honest about my state of mind :)

We have lived a very structured life under which Molly has thrived and so have I. I like a schedule and so does she.  But I was ready for NO schedule. I was ready to hop in the car and have no itinerary (or very little). I wanted to go where the wind blew us and if we could see friends and family along the way...all the better! And so we did it! And I'll tell you all about it in installments!

And because of the month long break....the crumbs aren't nearly as annoying now that we are back!

Innisfree: An amazing community for adults with disabilities

As you know, I have fantasized about the perfect community for Molly to live in now that she is a 21 year old adult. She too would like to move out from under our roof (just like your typical 21 year old wants). For us the challenge is finding a place where she will be safe, a place that will be around for the rest of her life, a place where she can live and work and have community with her peers.

We found that place in Virginia, 17 miles outside of Charlottesville. Not that we will have Molly move there as it's too far from us in Colorado. But at least it's a place to model their format and create a forever community in Colorado. And it's a good thing that we won't be submitting an application for Molly to live there as she was in "GO HOME" mode after our month long road trip. She wanted nothing to do with the two hour tour. She was crabby and walking 100 yards in front of us wherever we went like "let's get this show on the road slow walking people".  I'm sure they might have felt like she would not be a good addition to their community based on how she was acting. But we know better, don't we? She'd add A LOT of value and get the place cleaned up in no time. ;)

So here is a mini tour of what we saw of the beautiful Innisfree "A Life Sharing Community" www.innisfreevillage.org

Sign on the way in.

Sign on the way out.

Innisfree was founded in 1971 by a group of parents 40 years ago on 500 beautiful acres, nestled up against the Blue Ridge Mountains. There are 40 co-workers (adults with disabilities) who live there full time. There are an additional 35 full-time residential volunteers and support staff. I loved learning of the "volunteer" concept. It's like a Teach for America program in that you commit to one year of service to Innisfree. In return you get food, lodging, insurance and a small stipend. Many volunteers stay longer than one year. The volunteers live in the homes with the co-workers and are in charge of the various workstations and daily living.

I felt my body exhale as we drove onto the property. It's a slower pace as you see the community adults meandering from one building to another. Everyone stops to wave and see who you are. The day is broken up into 90 minute blocks where everyone participates in a workstation. Then they switch to another workstation, then they all have lunch together. The afternoon has one more workstation and evenings entail preparing dinner, enjoying hobbies or catching up on the news. No one watches TV for prolonged hours. I loved how organized it appeared and that a solid structure and schedule is created and followed. Molly would thrive with that. So would I.

We had a tour of the various workstations: weaving, woodworking, the bakery, the farm (eggs, wool)...cows were out to pasture,  the dining hall, the art room, the flower garden and one house.  Molly was in a rush so our sweet tour guide cut it short so that we could get on the road to head back to Colorado.

Everyone there seemed so pleasant and happy which had me asking if they screen out folks with major behavior problems. They do. There also is a spectrum of disability as many were very verbal and others are non verbal like Molly. There is no one with high medical needs either. I noticed that in the various workstations many were working, but if an individual wanted to sit and watch, they could do that too. There isn't pressure to perform.

PS Sorry about the format of the pictures. They are all willy nilly as I still can't figure out how to post them on this blog site!

This guy was SO friendly and explained how he was making placemats.

Another co-worker working on a loom.

Some co-workers work fast, others are very slow. There is no time constriction or quotas they must meet.

Look at how intricate this pattern is!

They sell products at farmers markets, etc.

Beautiful placemats. I was so impressed!

Chenille scarves

Then we went to the bakery where they were making these two types of bread for the day.

Beautiful wood working projects.

He was SO friendly and proud of what they do. He created the salad tossing spoons on his own. Cut out of Virginia too.

The volunteer that was helping the co-workers in the wood working station is building a tiny house on his own time that was just outside. I love that the volunteers can cultivate themselves too!

Free range eggs feed the community AND make $

Wool from the sheep

Baby chicks 

The dining room where everyone gathers for lunch.

One workstation is setting up the lunch room and preparing the meal. They eat the vegetables they grow and the eggs that are hatched. It's a very healthy diet at Innisfree and exercise is also part of their daily routine. I didn't see any overweight people which is quite unusual in the adult with disabilities community. Our tour guide said that even the picky eaters finally start eating the vegetables :)

Silkscreening (is that what it's called?)

Aprons

Dried flowers for Herbal teas

Flower garden

Drying

Herbal teas

Living room of one of the homes. All the homes are very nice with as many as 5 co-workers and one volunteer living in them. Dinners are served in small groups in the homes at night. Homes are co-ed too which I found a bit startling...but I must just be a fuddy duddy!

I love the intention of the community to create a space where the co-workers are valued and can contribute to their own wellness and happiness. They aren't pushed to do more than they can but are encouraged to try a variety of workstations. They are out in the community for Special Olympic sporting events, Farmer's Markets, community outings, etc.  They have their own rooms that they can decorate how they like and create their own space. I didn't take a picture of the room we were shown as I felt that might be intrusive, but I adored how the lady had 5 deodorants all lined up nicely. Think that she might be on the spectrum? :) The co-workers range in age from 21 to 90 years old. It is private pay and families must provide a financial portfolio to show that funding will be able to cover care after the parents are gone. Innisfree tried to make sure that once an adult is living there, they never have to leave (unless health issues in old age warrant it) so fundraising is always happening.



I will keep this beautiful Lifesharing Community in the forefront of my mind as we try to create a forever home for Molly! In the meantime, all it takes is $ and others with a shared passion. Who wants to join me in creating this special place in Colorado?