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.

Didn't see this coming!

Isn't the job thing supposed to get easier as you get older? Somehow that hasn't been the trajectory for my man Brooke. After 6 years in the orthopedic sales field and spending many hours in the OR (operating room) and working at the mercy of others schedules not set by him (the surgeons), he decided to move back into pharmaceutical sales where he had worked previously for GlaxoSmithkline and Purdue Pharma. A 401K, company car, health insurance, salary, paid vacation, plus commissions and control over his own schedule, were all things that he had not had since being self employed for the last 10 years! It all sounded great.

So this July, he accepted a position with inVentive (a contract sales force for the pharmaceutical company Mallinckrodt). He was back to selling pain drugs and enjoying it. And then he got the call 3 months later on Wednesday (the morning that I had just returned from Virginia) that Inventive had lost the contract with Mallinckrodt and the team had all lost their jobs. UGH!! Welcome home!

So here we are. I wish that  we could invite you all to a party. We could drink cold beverages on our new deck, watch the sunset, eat yummy food and brainstorm Brooke's next job. Since many of you live SO far away, we can have a virtual party here where you can throw out ideas and job offers. :)

He's funny and can make you laugh with his off color take you by surprise (but hilarious) jokes. Is there a job for that?

He's honest and ethical. We all need more of that. Just look in his eyes and you know it. The twinkle is my favorite part.

He's a great salesman who works hard and is there for anyone who needs him. Believe me, he wasn't home until late and left very early for years and it wasn't until a going away party for him from his last job that I heard all the nice things about his above and beyond efforts.

He's one of the best people that I know and he deserves a career that allows him to shine and provide for his family. A priority that he takes very seriously.

Plus Jack eats a lot as he's an (almost) 16 year old. And Molly can't support the family yet as she's still a bit clueless about her future. As for me.....I need a job too. Any ideas on that? :)

The family 

Jeeping

Jack's first skis.

Molly's first Halloween.

Our wedding day 1994.

Jack's summer lax.

Hiking with Molly and Tucker.

Working out with the best P90X style.

He's a keeper and a hard worker. Know anyone hiring........?

Know what an IEP is? Every family that has a special needs child does.

We had Molly's annual IEP (Individualized Education Plan) meeting yesterday. For those of you that don't have a special needs child, this is a formal way for everyone that is involved with your child's education to get together in one room to set and review goals for the coming year(s).

We typically fill up a small conference room. Both Brooke and I are there, the school psychologist, the speech therapist, the special ed teacher, the para professional who works with Molly, a member of the schools administration, a regular ed teacher who has Molly (in this case her PE teacher), an occupational therapist in years past, Molly some years (though we think that it stresses her out as we are all talking about her and she can't easily participate meaningfully. She isn't there every year but is always invited. Going to PE class is WAY more fun for her) and whomever else we'd like to include. Sometimes families request a professional from an outside organization to come support them.

In the early days, these meetings could be very contentious as we were asking for more than the district would normally provide a child with autism. These meetings began when Molly was 3 years old when the district then took over legal responsibility for her education until she turns 21 years old. I'm sure they were hoping that we'd move to another city along the way as we asked for A LOT! :) And graciously the school district has provided. Molly has been blessed with teams throughout her elementary, middle and high school years that have worked hard to give her the best education and feelings of inclusion and well being that they could. Some years were better than others and I can only sing our highest praises for the current team that Molly now has as a senior at Manitou Springs High School. All I can say is "wow". They are hard working, think outside the box, pushing Molly as far as she will go and backing off when they are at that "about to break into tears" line. They find places to include her with her typical peers but also make the special ed area a lot of fun too.

Our goal in every meeting with the team is "what is best for Molly and how do we get there?" I always try and keep my ears open to the team as I know that my first reaction will always be for Molly's safety and I tend to overprotect. I need to be encouraged to let go and I appreciate the teams efforts to nudge me along. An example of this was in a meeting last year when we were talking about job placement options and they suggested the Marion Soup Kitchen. I immediately pictured every scraggly, homeless beggar with a sign at all of the on and off ramps to Colorado Springs, staring at my daughter. I vetoed the idea immediately. Then the team told me that Molly would be on the family side to serve meals where the moms and kids ate and I immediately relaxed (a little). Also the paraprofessional (I will use the term "para" from now on) that Molly knows would be with her at all times. However I still pushed back and asked if Molly could do this sort of thing in either the elementary school or middle school where everyone knows her (and it's safe). The sweet special ed teacher reminded me that Molly needs to branch out into the bigger community and practice being around others that DON'T know her situation. YIKES! Protective Kathy feels the grip in her stomach but knows that this is true. To learn new skills, we have to practice them....even if you can't talk and will hop into a random car with a total stranger. :) The final decision this year is to include Molly in a protective work environment up in Woodland Park where teachers and her para can work together in the recycling environment sorting and I'm not sure what else. Not even sure what they are recycling? But there are no homeless men there and for that I am thankful.

We begin the meetings with where Molly currently is and sometimes this can be a bit of a wake up call as we tend to focus on what she can do as opposed to what she can't. BUT we need to acknowledge the hard as that is how she continues to receive services as she grows up and out of the protective school environment. "Molly continues to be a student with autism and is identified in the severe range for social pragmatic communication. By the state guidelines she carries a level 4 (the most affected) in all areas to include significantly impaired social interaction, social communication, academic communication, non-verbal communication and perspective taking". Oof. Tough to hear as she has SO many things that she IS good at but I want you to be aware of the baseline that we are working with and that I am writing about.

So that's enough of the bad stuff....onto the good stuff and all the gains that Molly has made in the last couple of years. "One area of steady growth is Molly's oral speech.  Her speech has made noticeable change despite the challenges of her apraxia of speech. Molly can imitate with increasing accuracy many  2-3 syllable words and up to 5 word utterances. She has approximately 35, 2-3 syllable words that are consistently intelligible. Her ability to articulate sounds is also growing." There is a lot of speech therapist jargon that I'm slowly understanding myself ""vowels and diphthongs' (what the heck is that?) "her increase in consonant phonemes", "she can continue to use words using a multi-phonemic approach".....see what I mean?

"Molly enjoys using her iPad, doing puzzles, and coloring. She enjoys her interaction with a student that comes to work on her speech, paint their nails and play speech games. She loves crafting and cooking. She loves to swim and hike. She is very athletic and chooses to shoot baskets in PE. She enjoys games and taking turns. She loves to share her belongings. She loves music in particular Disney and Mickey Mouse. She loves to dance. She seeks to appear like everyone else. She observes behaviors of others and mimics other students." The team shared numerous stories of how Molly is appropriately gathering with her peers and hanging out with them during down times filling up her water bottle like they do and bringing her iPad to the table since they all have their phones. :)

We all agreed on the many challenges Molly faces due to her autism. She gets paralyzed when schedules are changed and she isn't sure what is expected or what to do next (without being told). She continues to be challenged about initiating activities (she waits to be told what to do). She needs to learn to initiate asking for help from a trusting person who can help. Every 5 minutes a member of the team guided the conversation back to life after Molly turns 21 and how all of these skills will be useful in the job world. So every 5 minutes my stomach would clinch again.

WHERE did the years go? How are we facing these issues already? Molly is happiest when she is engaging in a meaningful activity surrounded by people. Molly is happiest when she can get out of our home and have a fully scheduled day (currently school is what she adores). Brooke and I will be happiest when we can find that perfect placement for Molly. This will be a fun year as we all explore what that might look like and the team continues to work hard to prepare Molly for that day. We have 2 1/2 years. The time starts now!

One of my favorite pics from Molly's senior photo shoot.

Today's jeeping adventure up Rampart Range Road (scene of the Waldo Canyon fire).

You can dress them up for Homecoming Dance 2014 but it's still pretty awkward.

Fun "flash tat".

She's SO hip.

Blow dry AND flat iron fancy.

Make up too.

We needed boutonniere instructions. Luckily Cheryl figured it out.

Thank you Spencer.

Yes, the arm around her was prompted.

The dads with their kids.

A few weeks ago I emailed Spencer's mom Cheryl about the Homecoming Dance to make sure that date would work for Spencer to attend with Molly. The thing about having special needs kids is that we still have a huge hand in their social activities and engagements. Actually we probably have the only hand as they don't initiate any activities on their own. At least Molly doesn't. When Cheryl gave me the all clear, I practiced a short sentence that Molly could use on her talker to ask Spencer to the dance when they saw each other at speech therapy. She said "Spencer dance (with) me?". I'll take the blame for omitting the "with" as I just couldn't find it on the talker.  Molly isn't very good with the complete sentences anyway so Spencer would get the gist. I had her practice "saying" the sentence two times and we were ready. I gave the speech therapist Barb a heads up that this would be happening, and that maybe she could initiate the interaction.  Cheryl and I went and sat in the waiting room for the hour of their appointment and eagerly awaited the results.

Barb came out and reported the cute interplay. Molly asked Spencer using her talker. He said "yes". Barb said "What will you wear Molly?". She replied "Pink blouse. Jeans". Another boy/man in their group said "I think she should wear a dress". Pretty cute as he's non verbal too and this response shows just how much our kids are taking in of their environment without us really realizing it. I agreed, she needed to wear a dress. So Grandma (Brooke's mom) had a cute pink top and a cute black long dress that fit and looked darling on Molly. But then the next week at speech therapy, they were again talking about the upcoming Homecoming Dance and asked Molly about her outfit. This time she said "Pink blouse. Silver skirt"(Grandma's was black). Hmmmmm I thought. Silver WOULD look cute with the pink top. Then I said "Is there anything else you'd like?" And Molly said "gloves". I asked what color. She said "Red". I motioned on my arm both at the wrist and then at the elbow to determine the length that she wanted. She pointed to the elbow. So there we had it. Pink, silver and red. Where does one actually purchase long red gloves? I had NO idea. I also wasn't sure if I should try and talk her into something that matches a little better but then relaxed into letting my girl be my girl. It's fun to see what her choices are when left to her own devices.

She came out in this # this summer so the pink/red is a theme for her.

So now Grandmas pink sweater wasn't going to work since it was long sleeved and Molly wanted long gloves. So a shopping trip was in order. Off to Marshall's I went, and as fate would have it, the darling silver skirt practically jumped off the rack as did the pink top. I ran to the ARC next door thinking that maybe someone had donated a pair of long gloves that I could then dye red (would have to YouTube how) ....and to my amazement, right up front, there were red gloves set out for Halloween :) Perfect.

My fashion forward friend Berkeley gave me the heads up that the flash tats were all the rage during  her daughters sorority (spell check auto corrects to sobriety which is pretty funny)  rush at the University of Georgia. So I just had to have them for Molly's big night. And we had to have her hair done as I don't even blow dry my own hair which is why Molly's has NEVER been blow-dried in her entire life. No split ends on that head!

When Molly was little, getting a haircut was a nightmare! I had to constantly pump one skittle at a time or bites of cookies (or whatever junk would appease her) into her mouth to keep her sitting for even 10 minutes. I'd tell the hairdresser at Super Cuts "Just cut FAST". Since Molly would not leave any barrettes or hair thingies in her hair, we always had to keep it short. Thus the regular visits to Super Cuts. Through the years, she has gotten to love that time in the chair. She would stay all day now looking at herself if she could. Afterwards, she hops up, grabs the water spray bottle every.single.time and does a little squirt on her bangs.....and that is that. Still not sure why she does it, but she does and we just let her. In preparation for her big dance, we went to see Amber. Molly had lots of firsts on this visit. She had her hair washed in the basin. She had her hair blow-dried. She had her hair flat ironed. The entire time she was beaming. Jack and I got such a kick out of watching her and the perma smile on her face. Very touching and sweet. Looks like we will need to do that again when we do her senior pictures.

We told Spencer's dad Jon to bring him over at 6:30pm. We would do pictures on our deck and then head out to Wild Ginger for dinner. It was funny to watch the Rose's do what we do: snap 1 million pictures in an effort to get one decent one of our kid. We say weird things that will get our kids bizarre senses of humor to laugh. "Flat cheese" gets Molly. We never say "Smile" as we get these very stilted, strained, chin jutting forward, grimaces. It's "Scooby Doo" for Spencer. It's "Chardonnay" for me.

I learned my lesson after the Goodwill dance the kids went to last spring together. It was just the 3 of us at dinner and it was so quiet that even I felt uncomfortable. So this time I invited Jack Bell to join us as I knew he'd say "Yes" to eating out (his favorite thing to do). Spencer's mom Cheryl joined us too which was fun. When we asked for the check after we were all stuffed, Spencer pulled out his wallet to pay for Molly. His parents had worked on that with him and he did awesome.

Jack was delivered home, Cheryl went on her way and I drove the kids to the high school for the dance. It was raining and we were the only ones standing in line with an umbrella. Fancy that! Was it because I was the only adult in the line? Probably :) The place was decorated and festive. The music was blaring and fun. The strobe lights and smoke machine were cranking. It was so fun. Molly immediately started dancing. Spencer stood (he's not much of a dancer). I had to run onto the dance floor a couple times from my dark perch on the bleachers to prompt Molly to go back and get Spencer when she took off to go dancing with kids that she knew. The other time I waited for a few minutes to see if Spencer would actually put his arms around her to slow dance like all the other kids were doing around them....but he didn't make the move, so I jumped down to put their arms around each other. They happily danced (stood) that way until the song ended.

Early on the fire alarm went off (that we could barely hear). Apparently the smoke machine had set it off. I was amazed how calmly all the kids filed out...into the rain and the wind. We again were the only ones with the umbrellas. I'm such a good planner a header. "Be prepared" is my mom motto. "Plan B" is another one of my good ones. Spencer and Molly were troopers through those unexpected situations. Boy they have come a long way. When everyone could go back in, the kids resumed dancing (standing) and having fun. Molly was truly in her element. Peers and kids surrounding her with music cranking is like heaven on earth. Not so sure that was Spencer's heaven but he rallied.

The kids have speech therapy together today so I'll be curious what the follow up conversations reveal.  I had eyes on them all night so I'm pretty sure nothing really saucy will come out.

Dr Phil's powerful interview with a mother of a child with autism.

Every family deserves days like these. This made my heart sing.

I was an avid Oprah and Dr Phil watcher in the early years of motherhood. Once Oprah left her afternoon time slot (and went to her own network whose channel # I never learned and therefore have never watched), I somehow lost track of Dr Phil too. Yesterday I happened to turn it on about 1/2 hour into the segment, so I don't know everything that was talked about. Dr Phil was interviewing a crying woman in jail. She seemed heartfelt, genuine, attractive, and shared a story that I most certainly could relate to and empathized with her through my tears. She had tried to commit suicide through carbon monoxide poisoning both she and her severely autistic 14 year old daughter. She did not succeed and has spent the last year in jail for that mistake. Her daughter miraculously survived, was in the ICU for a long time, and the dad is now raising all 3 kids on his own. He has filed for divorce. The mom understands why he has made this decision and graciously says that she was lucky enough to be married to him for 18 years.

Her daughter was aggressive  and attacked both the mom as well as the younger brother and sister on a daily basis. The mother had asked for help but hadn't really received any; she was overwhelmed, she was protecting her younger children, and she ultimately thought that she was giving her daughter the gift of Heaven and a much better life there. She saw this as a gift as opposed to murder. I haven't lived her story but I have been close enough in her shoes that I could FULLY understand her desperation and could understand why she did what she did. Of course she is selfish in that she was leaving the other kids without a mother, and a father to raise them on his own through the backlash of that awfulness, and yet through all that, I can still see her crazy rationale. I know...it's crazy that I understand her. But I bet most families that have a child with autism do too. Especially ones that have a spiritual belief in God and Heaven.

Try living in constant angst that your eldest will lash out at any moment on your younger children. Imagine how scary it is for the younger kids to live in constant fear of an outbreak? A big heart ache in this scenario too is that the younger kids understand that their older sister just doesn't understand and can't control herself. She isn't doing it out of anger and hatred, it's that she is overwhelmed and doesn't know how to vent appropriately. She loves her family and probably feels badly that she hurts them....and yet the outbursts continue. What is hard to explain to the outside world who don't live with autism, is that you can't just discipline a child with autism the way you can your typical kids. Try speaking Japanese to your typical 5 year old and see if they obey you. Saying it over and over again will get you no where as they don't understand you. Raising your voice won't help either. That is the same for a child with autism: language is blah, blah, blah. Think a time out will work? Yeah right. Unless you strap them into a chair, they aren't sitting for long. How about a delayed consequence? "You won't get dessert if you do that again." "I won't take you shopping for that dress if you back talk again". That punishment is too far away from the incident and is a concept that is difficult to understand. Those don't work either. Your kid is pitching a fit in public? Plan B is what we always used: Exit the building. Many attempts at Plan A, ended in Plan B. With Molly, we reinforced positive behavior as opposed to punishing the negative. Thank you teams and teams of ABA therapists and para professionals at schools who helped us with this strategy through the years. Fortunately for us, Molly has never battled aggression. She is very passive, but in her youth had daily tantrums (but no one ever got hurt because of them).

As a mom, how do you protect everyone? You love them all. Yes, even our disabled children we love with all our hearts. The love in no different than our love for our typical children. Love is love.

The day in and day out grind of life will finally wear you down. I personally wanted to run away. I got to a place where I truly believed that a babysitter could take care of my kids better than I could. I had had enough. I didn't consider killing myself or Molly but I can see where this mom would go to that mental place. That very dark place. Luckily for me I blamed our miserable marriage for my need to run away and Brooke agreed to counseling. Enter a professional that could help. It was there when he asked how the therapist would bill this appointment that she said "Under Kathy's depression". I remember being so shocked yet relieved at the same time.

Is THAT what this is? Is that why I want to sleep all day( but can't since I have two little kids)? Is that why I'm not hungry? Is that why Brooke is so annoying? Is that what my night sweats are about?

And so began my slow crawl out of depression. Because of my massage therapy background and more wholistic approach to body wellness, I went to a Naturopath first. If that didn't work, I promised Brooke that I'd go on meds. It did work then and for a long time afterwards, but depression raises it's ugly head now and again but at least now I know the symptoms (Brooke bugging me or I feel like running away) and I know when I need to get back on track and what I need to do to make that happen.

Part 2 of the Dr Phil show is today and I will miss it due to Jack's soccer game. I will watch it On Demand tonight to see how this all turns out. Do the kids miss their mom? Do they understand why she did it? Does the autistic daughter understand any of it? How is her husband dealing with the backlash this last year? He now has to do it all by himself without the tag team effort that couples are desperate for. Will he forgive her? Will she be in prison forever or will a jury understand her situation? Do you understand her situation? Do you feel compassion for her? Has anything ever taken you to the brink before?

When asked how life has been in prison for the last year and if it has been easier than life at home was.....she basically said "yes". That didn't surprise me either. We have lots of hurting, desperate families out there that are facing a lifetime with these very impaired kids. I hope that we can figure out a compassionate long term solution before more suicides happen. I hope that I can be a part of that solution.

My very tall brother Dave and his most excellent trip to Colorado.

Dave in Garden of the Gods

We were born 22 months apart, became best friends during our college summers working and playing at Rehoboth Beach, Delaware, moved to Aspen, Colorado together to be ski bums before we found "real jobs", and have talked weekly since then. Dave's traumatic brain injury almost 14 years ago changed all the dreams and what we thought life would look like. But who am I to judge as 46 year old Dave looks pretty happy to me? He even says that he's happier now than pre accident and much of those kudos go to you....his friends from near and far who continue to reach out to him, invite him to your homes, feed him, call him, join him at the movies and sporting events, and share laughs with him. This continued support 14 years later is a tribute to who Dave was then, but is also a tribute to who he is now. It's also very telling of the great taste he has in friends. You all are the best!

Dave lived in Denver at the time of his accident and he continues to think of Denver as home (though somehow I don't think he will ever actually move back there as Charlottesville is perfect in size, his ability to navigate on foot and via bus, the plethora of UVa sports, and the surplus of amazing friends and family). He invited himself to Guy Arnold's house and lovely Guy made it happen. Dave and Guy were boarding school roommates at Woodberry Forest School so there is a deep bond that allows for self invitations. They went to the BMW PGA golf tournament one day and could have touched some of the biggest names in golf who stood just feet away. They spent a day up in Beaver Creek at Guy's beautiful mountain home where Dave actually caught a fish. Guy was floored when he went into the kitchen to make dinner and Dave popped up from the sofa where he was watching TV and set the table! Guy just wasn't sure what to expect in terms of Dave's abilities and disabilities so this was a lovely surprise. I will interject that Dave really IS the best guest: he makes his bed (unlike his sister), he sets the table, he would bus the table too if I didn't have my kids do that. He makes his own breakfast or lunch and will go to your kids sporting events as he loves sports of any nature and with any age competitor. He even clapped for Molly's special needs soccer team (The Thunder) where no one understands defense, so if you get the ball, you are guaranteed a goal. That was a very high scoring game.

Carla Tamborelli and her daughter Coco were the next old friends that took Dave in. He ate well, saw a gymnastics practice, and appreciated Carla's idea to go back to Craig Hospital for Dave to see if he still knew anyone from then and to let the staff see how well he is doing. They went to the wrong floor (there is both a Brain Injury floor as well as a Spinal Cord injury floor.) When Dave approached the nurses station and asked for Dr Manley, the nurse looked at him blankly since Dr Manley was his neurosurgeon at San Fran General where he had his accident. From behind the station stood Dr Weintraub, who said "No one here besides me would know that name since Dr Manley is a good friend of mine. You fell out of the window and played lacrosse, right?" Dr Weintraub WAS Dave's doctor 14 years ago and it's amazing that he still remembers those details. What a great doctor. He never works on Saturday, he wasn't on the Brain Injury floor, and it was God or fate or destiny that allowed that awesome reunion to occur. (A side note: If you saw Olympic snowboarder Kevin Pearce's movie "Crash Reel", Dr Weintraub was his doctor at Craig too).

I knew Bob Bodor casually for a couple of years. He was the football coach at Colorado College until the school terminated that program. Once that happened, he and his family moved to Hawaii for a year and it was there that one of Dave's visiting fraternity brothers posted a picture to FB mentioning his Denison Beta brother Bob. I almost had a heart attack as I had NO IDEA that Bob and my brother were friends nor that they were fraternity brothers. What a small world. Guess that's the disadvantage of not having my maiden name stamped on my forehead as it had never come up in conversation. So a couple of years ago the Bodor's had moved back to our sweet little Manitou Springs and he was out trick or treating with his kids, when he came to my door. Suddenly it dawned on me that he needed to come in and see my visitor who had just arrived. He and Dave were reunited. This time when my brother visited I planned ahead and had them over for dinner. Beta brothers like to hold hands :)

                                                 

On Monday Dave had suggested going to a movie (he sees everything that comes out. I see nothing and never know what he is talking about but love that there is an activity that he loves and can do by himself). The timing wasn't to be for us to be home in time to meet Molly off the bus so we did this instead. Thank you neighbor Gael for playing photographer.

                                                 

I have no short white skirts and really shouldn't have even worn that little black number. Ok, I have GOT to get back into shape. Have been seeing too many "is that really me?" pictures lately. That length skirt looked so much cuter on my childhood body. I don't have knee high socks nor any ribbons for my hair but went with the best I could find. Dave laughed at his knee high socks from when he was 4 years old...but then laughed even more realizing he STILL wears them for his brace leg. I like how he tried to make the same face. This is a little embarrassing to admit, especially since I said TWICE. "Dave, we have to to put both hands on the rackets" as I saw his right arm still hanging by his side. "Dave, both hands" until it dawned on me.....DUH...he can't move his right arm. Gosh, how many years for me to fully realize this is reality? He's so gracious and didn't get mad at me.


                                                   

Aren't the fake puppies not early as cute as the real ones?

We had a couple litters of Golden Retrievers when we were  young.

Love you Dave! I'm proud of how far you have come, how hard you work at everything that you do, and how gracious and appreciative you seem of everyone's efforts to support you in the great life that you are still creating for yourself. Come back anytime!

Who am I and what am I supposed to do now?

Dear Summer,

Thank you SO much for those glorious 3 months. I am so lucky to have a spouse that works so hard and gives me the flexibility to take full advantage of you. We went to lots of great lacrosse games and tournaments. Thank you for the glorious sunshine and low Colorado humidity. We swam ( well... Molly swam) at the pool early on until mid summer when you rained a TON and it was too cold in the afternoon to go. But thanks to that, we had No fires this year! Even the flooding didn't happen. Got to travel back to Charlottesville, Virginia seeing family and then down to Williamsburg for great historical knowledge and family time. Then we hopped in our rental and drove on down to Wrightsville Beach, NC where Jack fell in love with all water sports and admitted that he might consider living near the water one day (instead of just near his precious snowboarding Rocky Mountains). Then I got to stay on at Figure 8 with high school besties for girl talk "therapy camp" as we have named our time together. Truly nothing like being with girlfriends who have loved me since I was a teenager, who don't know my spouse and kids, and still love me all these years later. Biking, walking, running, paddle boarding, boating, drinking, eating, beaching, sleeping: all so rejuvenating that I return home feeling happy and renewed.   Upon my return to reality, it was Jack's two a day soccer practices, adding football practices on top of that so that he can be the kicker. Lots of driving back and forth at all hours. Drivers Ed stuff, Brooke's fabulous new job, the brand new Trex deck is now ready for use, Molly has started school, Jack has started school and Kathy's busy life has..............slowed down. Thank you Summer!   xo Kathy

Which brings me to today. Who am I? What is my life purpose?

I'm 48 years old, my kids aren't as needy as before, and I find myself in that midlife place. I want a fulfilling job that gives back to the world and yet enables me to still have the flexibility to be home at 3 when Molly gets home from school as she still can't be left alone. I want to see all of Jack's soccer and football games. I want the stay at home lifestyle with the full time working pay check :)

So here is my plan: This is the year to start creating an amazing group living/working scenario for Molly post high school. She is a senior and that next step looms large. I need to visualize first what that looks like and then start creating it. My goal this year is to also document the amazing gains she is making in her speech! IT IS FREAKY and AWESOME!! How does a kid start talking at 17 years old? I want YOU to see the coolness too. Jack is going to help with his fun video projects and we are thinking that his byline will be "Jackin' with Molly" as he has so many ideas of how to share her quirks in a funny, loving, yet informative way. Stay tuned. I think you will enjoy his productions.

So I'm back. I'll try and be consistent with updates as there are SO many Molly summer stories to share: Like she almost got hit by a car and died in front of my eyes. Thank God for good brakes. Her many new words. My friend Jenny's perspective on Molly as she hasn't spent much time with her through the years.... and many others.

Tubing

Dinner with the Smethurst clan

I love this picture.

Fun high school crew!

Hard to believe one of us has a kid that is MARRIED now!

Early deck building

This and That....summer in full swing.

Did you worry that after my last post that our marriage imploded since it's been 3 weeks since you last heard from me? It didn't....we are going for 20 more. We have been having a lot of fun and I just haven't been in the posting mood. So instead I'll just share a few pictures from our summer so far.

Our "new" 1997 Jeep named Burley!

This has been SO fun (and kind of scary too on the true 4 wheeling roads). I haven't driven a stick shift since college in the red Pontiac Phoenix that my parents owned and that my brother Dave and I got to use in the summers. Driving with a clutch sure deters the use of trying to talk on the phone and just makes driving really fun. It's a little pathetic (or A LOT pathetic) that I had a sore left knee after the two hour drive to the mountains. It's called "clutch knee" I think. We also are glad that Jack gets to learn as you never know when you might need to know how to drive a stick.


Brooke loves to mountain bike high up into the mountains to get away from it all. He also hates that Molly can't experience that with him since she can't ride a bike. So in researching 4 wheel drive options, we decided to buy an old Jeep that we could use to add to our limited repertoire of Molly activities. She loves to hike, swim, and now Jeep. We have named him "Burley". Brooke hauled Molly around for years in the bike burley when she was little. He got his exercise, she got out and about, and I had a beautiful break. Her knees were up around her ears, her head was above the roof line and she was at least 30 lbs heavier than the recommended weight to be pulled before we finally gave that up as an option. This is the adult version of the burley. We love it!!

300 piece puzzle

 Molly LOVES puzzles and spent hours trying to complete this one. It's one of the larger that she has ever done. She needed help getting the borders done but after that she did it herself. It's fascinating to watch her as she doesn't use the picture to find the fit. That makes me CRAZY to watch as isn't it obvious that the blue sky doesn't go down in the sand? She judges solely on the shape of the puzzle piece. It's wild when she scans the pieces, picks one up and BAM plugs it into a weird location and it fits!! Since she had such a blast doing it, we thought that the next day she'd want to do it again, so we broke it all apart and got it ready for her.....but she had NO desire to do it again. Make sense. But it's nice to have an activity besides TV that engages her and feels like it's good for her too. I'll try pulling that one out again soon.

One of Molly's first ABA therapists came for dinner and a visit

 Meghan worked with Molly the year after she graduated from college and was applying to Medical School. She decided to become a Developmental Pediatrician after working with Molly and seeing that she wanted to make a difference in the lives of families like ours. We were so lucky to have her and we are touched that Molly had such a huge impact on Meghan and her career choice.

First real 4 wheeling outing.

4 wheeling hair is kinda crazy.

The Cheyenne boys on Jack's summer lacrosse team

We are lucky that so many of Jack's buddies from his school team are also playing on the Air Force Academy summer select team the Thunderbolts. After the Rutgers tournament was over, our guys got to go explore NYC. They loved it!! Jack is the 3rd from the left on the back row.

This is a huge week for lacrosse out here in Colorado as the World Games start tomorrow in Denver. These cuties below are team USA who were all in Colorado Springs yesterday at the Olympic Training Center. They also are having a few last practices at the Air Force Academy before the tournament begins. I hope that a few are still around when I drop off the boys for practice today. Why do you think that I volunteered to take carpool tonight? :) GO USA!!

USA Lacrosse team