Her first Music Therapy session

What IS music therapy? It's one of the few therapies that we haven't tried in the almost 19 years of Molly's life. I'm asking myself "why didn't we start this earlier?" after her first session. She LOVED it!!

Here's what the NeuroRhythm brochure says: "Music Therapy is an established allied healthcare profession in which music is used within a therapeutic relationship by a Board Certified Music Therapist (MT-BC) to address the physical, cognitive, communication, social and emotional needs of individuals of all ages. It has been a formal profession since 1950."

"Neurologic Music Therapy (NMT) is the therapeutic use of music to address the cognitive, speech/language, and sensory motor function of individuals with neurological diseases or disorders. Treatment techniques are based on a neuroscience model and the influence of music on functional changes in the brain and behavior."

"We are a research based behavioral music therapy practice, and the ONLY company that integrates the scientific fields of NMT with Applied Behavior Analysis (ABA). Our experienced team has advanced, specialized training in NMT and ABA that enables us to provide our clients with the best data based treatment plans and research based techniques."

They use a fun, multi sensory, innovative approach that is client centered, positive and effective.

They specialize in: Developmental disabilities, Neurological Disorders, Autism Spectrum Disorders, Cerebral Palsy, Down Syndrome, Cognitive Delays, Speech Language Delays, Motor Delays, Sensory Processing Challenges, Behavioral Challenges.

In a nut shell: perfect for Molly! Let's get to the fun first session.

We went into a clean, bright, naturally sun filled room full of instruments in baskets and hanging on the wall. Molly's music therapist, Sarah, encouraged Molly to explore the baskets and try each instrument. Canasta's, drums of various shapes and sizes, a xylophone that Molly said "no" to.  Who knew that she didn't like that sound? Her absolute favorite instruments were any of the rattles and shakers. There was an orange, an apple and a banana shaker that she just beamed about as she shook them. After touching each music maker, she had to take a wet wipe and wipe them down before she put them away. You KNOW she loved that part. They won't have an issue with Miss Molly keeping the cooties at bay. In one corner of the room is the electric keyboard and an acoustic guitar as well. Both of those are reserved for the professionals.

The owner of the company, Kate, was in the room at the desk with her computer taking data as Sarah worked through various programs with Molly. The ladies would compare the data that they had gathered and then move onto the next activity. These first 6 weeks the two of them will work together to analyze Molly's strengths, weaknesses and work on the specific communication, initiation and sequencing goals that we had created and have been part of her IEP goals for years. After they have a program set up, Molly will have therapy two times a week with just Sarah.

Like last week during the intro session, both Kate and Sarah played the keyboard and guitar and sang a few of Molly's favorite songs to her. Molly danced her little heart out while tapping on a drum or clicking the castanets; mostly not with the rhythm of the music. That's from her dads side of the family ;) She threw in a lot of ballerina twirls that are pretty cute to watch and looked at me to see if I was impressed. The first session was a great intro for both Molly and me to see them incorporate a few songs that Molly loves, that they took the time to let her explore the new environment and get comfortable, and that they had a few goals that they were immediately working on and assessing.

Here's one example: Sarah and Molly sat facing each other. Each had a fruit shaker in one hand and a bell shaker in the other hand.  Sarah would shake the fruit and singing "going, going....going" .........."stop"and Molly had to copy her. When Sarah stopped, Molly was supposed to stop. Then Sarah would shake the bells in her other hand singing "going, going....". Molly would copy. Sarah would "stop" and Molly was supposed to stop. The first few times, Molly would go from shaking the fruit to immediately wanting to shake the bell instead of stopping in between. Quickly she learned what the expectation was. The next round there was no verbal singing, just the visual. ABA therapy is always starting with the easiest and making it progressively harder while collecting data to see how quickly a kid learns the skill. Then Sarah moved her chair behind Molly so that Molly could not see her. Molly had to listen to which instrument Sarah was shaking. And then stop once Sarah stopped. Molly rocked it!! Then they played music and Molly danced and then "stopped". All highly motivating for my girl.

What goal was that task working on you ask? I am asking myself that very question as I write this. Listening to instructions? No..... Sequencing? No..... Communication? No...... Guess I'll have to get back to you and take better notes next time.

Wonder if music therapy will help her tag issue too? Can't wait to see!

Lots of firsts for Molly

At 18 years old, Molly has been exposed to a lot of different experiences. Her autism has not deterred us from trying new things or going to new places. She has not always made this fun for us and we had the "Plan B leave quickly" in our back pocket to use during tantrums or loud fits of discomfort. Plan B has not been implemented in many years now and we attribute that to constant exposure to new and different people and places. And, let's be honest, music on her headphones. That is an easy way to keep Molly happy and for those of you who have sat next to us on the bleachers and sidelines of Jack's sports know this to be true.

Lacrosse is cold in Colorado. Music is being listened to in there.

This last week we packed in LOTS of firsts for Molly and she sailed through beautifully. The local agency the Resource Exchange is now funding Music Therapy. What is SO exciting about this is the partnering of two scientific modalities: ABA therapy and a certified behaviorist overseeing the bi-weekly sessions, partnered with music therapy and a masters level therapist implementing the therapy. Our first session was 2 hours of blah blah blah for Molly as we talked the whole time about goals and objectives and her history. The last few minutes the therapists pulled out the guitars and keyboards and sang the "Frozen" song and Molly got so excited and started dancing in the middle of the room. Will be interesting to see how they use this potent motivator of music to coax speech and specific behaviors out of Molly. On our drive up to the mountains on Friday, we let Molly play DJ with the music to see what her favorite songs were so that we can let the therapists know what music to use. Hope they know who "The Dirty Heads" are. Stay tuned as I will have more details after this first week of observation.

Secondly, our little athlete started Special Olympics basketball with other friends from Foundations for Successful Living (where she goes to work 3 days a week). Molly can nail a basket from near the hoop as she has had many hours in the driveway practicing as well as years of basketball in PE class. However, dribbling and far away shots are not her forte (yet). When picking out their jersey #'s, she immediately went for #22 (Jack's lacrosse #). That was one of the largest sizes and since she is so tiny now she ended up with the smallest jersey #1! Go girl! Games don't start for another few weeks which is a relief as I have no idea how she is going to handle a real competition? Will they call her for double dribbling (or better yet just carrying the ball)? I pray that there is a little grace surrounding the rules.... at least in the beginning :)

Finally, Molly was invited to the Manitou Springs High School winter semi formal even though she graduated last year!! She had a night out with friends with NO adults (i.e. teachers or parents) with her at dinner or on a drive to the dance. How cool and normal is that? I'll admit it was a little freaky for me to watch her walk away with the group of high school student council kids who were taking the group to dinner and then to the dance. Knowing that I wasn't going to be there to help cross the busy street, to help her order her dinner, to make sure she didn't lose her "talker", to pay for her meal...... and then not hear anything for 5 hours until I picked her up at 11 pm was disconcerting. And really nice too.

For reals I wasn't THAT nervous as I know the student council President Sophie Kilroy, who had invited Molly to come to the dance. She is so responsible and I knew that Molly was in good hands. There were 5 girls from student council and 5 of Molly's peers so that ratio was good and our kids were in competent hands. I didn't get a verbose report at the end of the night but it sounded like the evening went really well. Molly was dancing in the thick of the crowd when I arrived, the music was pumping, and everyone appeared to be having a good time.

It took everything I had to stay awake until 11 pm to pick her up so I was ready to hop immediately  into bed when we got home. Not Molly....she had to do her clean up routine around the house and was edgier than normal, which was to be expected after a night of not normal routines. So I let her do her thing, then tucked her cute little oxygen tubed face into bed @ 11:30 and didn't hear a peep all night.

Nights out with friends are fun and exhausting! Thank you Sophie and the awesome STUCO kids at Manitou Springs High School!!

"Where will Molly live?"

Driving to my favorite yoga class today, my mind kept spinning about my "purpose" in life. I was taking in the surrounding beauty of Colorado, my stunning Pikes Peak, but enjoying my toasty seat warmer at the same time as this beach lover still hasn't fallen in love with winter despite living here for 24 years. Once at the gym and sitting on my mat, the teacher slowly guided us into that quiet space to prepare for an hour of slow flow yoga. She said "Now is a good time to ask for clarity on your purpose or set your intention for your practice today". Has she EVER asked us about our purpose before or was she talking just to me? It was so timely and awesome. It was time to pay attention to what came up in the next hour.

I rushed home zen style (oxymoron?) to write down what had come to me. Some of it has been nagging at me for years (remember the "Insert Foot in Mouth" 4/11/14 where Molly sobbed when I said that she would live with us for the rest of her life story?) and some of the ideas were new. Want to hear about my new non paying job?

It is time to create a Tiny House community where higher functioning adults with disabilities can live in community and participate actively to the best of their abilities. Locally there is a big movement to house the homeless so this is a great conversation for the disabled community too. I envision there will be gardening so that Molly and her peers can grow their own food and raise chickens to harvest their own eggs. Let the buildings be solar paneled and environmentally conscious to keep the bills lower. Each client can live in their own tiny house that will be custom created for their needs (i.e. no microwave or stove for Molly). Parents can live in their own tiny homes nearby but will not be required to live there year round as this community will be staffed by professionals who will run and manage the community. One main lodge will house the kitchen and dining hall for 3 meals a day. There will also be a community room for games, movie watching, dancing, arts and crafts, puzzles, etc. A hang out area with a huge fireplace to read and congregate. An outdoor fire pit for relaxing and marshmallow roasting.

Depending on how much land and where this is located will depend on what the trade will be for them to generate an income and keep the clients busy during the day while giving them a sense of purpose and reason to get up every day. Car wash? Recycling? Make soaps/lotions and bath products? Or if this location is still in the El Paso County/Teller County area, can our kids still tap into the local resources and go to their jobs locally? I think that it can be a combination of it all.

Organic farming

What do I mean by "higher functioning adult"? They can be left unattended for 10-15 minutes. They are not medically high needs/ bed bound etc. They do not have major behavior issues. They are not runners. They still need significant support with ......everything. But are relatively easy people to be around and work with.

Side by Side?

Or strewn about in the woods?

We are a generation of helicopter parents. Some of us more so than others. I'm a 1/2 helicopter-er. For my daughter, I have to hover. For our son, we allow life to teach him most of his life lessons as we help him navigate the highs and lows and incrementally give him more freedoms as well as responsibilities. So when I imagine Molly going and living somewhere other than with us, I get a panicy feeling. Until others are screened and trained up, I'm not sure she would be as happy as she is now? But I also know that it wouldn't take long for her to learn the schedule. Systems can be created to prompt meal time, work time, free time such as: lights flashing? A loud speaker: "Dinner time!"? Or that can be on of Spencer's jobs as he is aware of all times and could come let Molly know? :) Our kids thrive on schedules (and scheduled down time) and we would create one for the benefit of all in a community atmosphere.

So I imagine not every parent wants to live in this community? That's even the case in our family. I'd love it, Brooke isn't as intrigued. I picture a variety of disabilities too. The "kids" (sorry I keep saying this but am having a hard time transitioning Molly into the adult world still) with autism really need and benefit from the very social, talkative kids with Downs Syndrome. Adults living with a Traumatic Brain Injury would be a good fit here too. I hope that I can lure my brother Dave to come one day!! Low medical needs folks with Cerebral Palsy too. We can incorporate retired adults that would love to live and benefit in this community setting too.  How can we cross pollinate a variety of sectors from our communities that can help support each other by living, growing, eating, and living together to make life meaningful for all?

Here is a great article about an Alzheimer's community in the Netherlands. Can't we use a similar model?

www.abcnews.go.com/Health/AlzheimersCommunity/alzheimers-disease-dutch-village-dubbed-truman-show-dementia/story?id=16103780

I love the care that went into creating an environment where they can thrive. They can roam safely. They can shop, get their hair cut and live in a space that feels like home. It's a beautiful concept.

Here is my kicker though since Molly LOVES the water and I do too.  I want another community in NC/SC/Ga near a lake or a beach where we can split our time. We parents are at that age where we are ready for warmer weather and living in Colorado year around doesn't cut it for this beach lover. Now that Surf Side Beach in SC has proclaimed themselves "an autism friendly travel destination" maybe we tap into their positivity and create a year round tiny house community there too? We could provide lodging for visiting families and thus generate an income this way to keep the community financially sound. Win, Win! And as this concept grows, can we have communities all over the USA where we can travel and share tiny houses and visit each other with an open welcome mat of understanding and support? What a beautiful thought!

On the beach

I can't stop looking at the house on the water! Once I get Colorado up and running, you can find me at our beach location!! Who's in? Especially those of you that can write a business plan.....

Step away from the white board!

As you know by now, Molly has some significant OCD tendencies, as do most kids on the autism spectrum. We have been in agreement to nip each one as they arise so that OCD doesn't take over her life. If you allow a kid to continue obsessing over a certain activity or pattern, it becomes ingrained and hard to change down the line. So we are constantly nipping one behavior that migrates into the next. Sadly, our job is never done.

So we have been very fortunate to have teams of compassionate people who have helped us do this through the years. Mostly teachers and para professionals...year after year.

She gathered pens/crayons/markers in the early years until her little hands were stuffed and unable to use her modified sign language.

Then she'd walk into a room, then back out, then walk in, then back out....and then finally walk in.

There have been SO many through the years that I have forgotten most of them. You have heard about her using our towels to wipe down the toilet and clean the bathrooms and then rehang the towels. Now she at least puts them in the hamper after use but I have LOTS of towels to wash on a weekly basis.

She is OCD about taking out the trash even if there is only a minute amount of trash in the can.

She recycles everything so don't leave important bills/paperwork on the table as it's going out into the bin in the garage. At least now she doesn't dump half a beer down the drain if you walked away and left your drink unattended so that the bottle can be recycled.

Some of the behaviors would take weeks/months to nip. And there would be HUGE tantrums associated with them as we would take markers away from her, not let her back out of the room once she had walked in, etc, etc

So I will say how amazed I am today....just one day after I got a text from her work at Foundations for Successful Living. "We had some conversations about not erasing every whiteboard she sees....even out in the community". That made me laugh as I find comic relief that others get to deal with what we deal with. Somehow no one else seems as annoyed as we are though! I could just picture Molly running around erasing important "notes to self", schedules, and worst of all probably the menu at Peak Towers where she goes to serve lunch to the seniors that live there. She is SUCH a cleaner and though that sounds nice, there are negative issues that go along with her tidiness.

I posted that comment to FB yesterday and heard from Molly's teacher Jill at her school that she does that there as well the one morning a week that she attends. Then we went to speech therapy and the therapist Barb said Molly erases the board there too!! So now that we are ALL onto her, we devised a plan. Barb added a key to the talker that says "May I erase the board?" and made Molly practice using it during speech therapy last night.

I reminded her this morning about it before she hopped on the bus to go to work.

And this is the text I got today: "I wrote on every whiteboard in the building with notes to Molly and reminders to ask before erasing. So far she has read them and left them alone" :)  I responded: "Wow! That is awesome. She is reading too!! Could you take a picture of it and send it to me?"

Molly, please ask if you can erase the whiteboards. Thank you :)

She was given a visual written message (since the auditory is harder for her). She was given a tool to ask on her talker, which empowers her. And everyone on her team is on the same page in nipping this negative behavior that affects others. Molly is smart and can learn so we don't allow her autism to give her a hall pass or excuse for doing something wrong. What I LOVE is that this new team at Foundations for Successful Living worked with us and took it one step further by writing on all the white boards. YAY team!!

And though she looks utterly dejected, I bet money that at least one of those boards will be erased today when no one is looking! :)

Molly's new sassy look

Molly has jumped right back into the swing of a regular work schedule since the two week vacation ended. Everyone else appreciates her cleaning it appears :) She comes home glowing and doesn't obsessively (or rather too obsessively) attack our house. The eight 3/4 full paper towel rolls under the sink addiction is back in full swing after a couple month hiatus so we will address this. In general, life with an occupied, scheduled Molly makes life smoother for the rest of us too.

Her being back at work has given me the opportunity to connect with SSI (Social Security) as we are freshly navigating this system. Had our 1/2 year chat on the phone with a nice man and her benefits should continue. Had another great email that she should hear this week from the the Resource Exchange (TRE) and funding should be finalized for her to receive music therapy. This intervention combines music and ABA (Applied Behavior Analysis) therapy to work on specific goals that we have set for her. Initiating activities and communication are the two biggies still. Since she LOVES music, this should be an interesting therapy and one of the few that we have never tried. Hopefully she will begin this next week as well as Special Olympics basketball! Wish she could drive like her brother........

Then this happened:

We haven't been to hairdresser Amber in at least 4 months and it showed. Molly won't leave barrets, head bands, clips  or rubber bands in her hair. She won't tuck her hair behind her ears either. She is left looking like Cousin It and was hiding all her cuteness. So when I made an appointment to finally get a hair cut, I asked her, while miming with my hand, if she wanted to "Keep it long. Or cut it short?". She signed "short". So I went looking through her scrap book of photos through her life and various stages of hair cuts and showed her 5 different ones to choose from. She immediately went to this one and pointed adamantly:

Amber suggested that we not cut the bangs this time but always could in the future. We agreed and the results make us all smile. Molly looks so sassy and cute. It's so much easier to wash and it dries without a fuss either. Even bed head is cute!

Afterwards, Molly and I went to Spencer's for a fun movie date. His mom Cheryl made yummy homemade pizza, I brought a salad and we watched the movie "Mama Mia". ABBA is one of my favorite albums and I have lured Molly into loving the songs too. Watching that movie NEVER would have happened at our house filled with Brooke and Jack's testosterone so it was a perfect night for us. Molly rocked out dancing to many of the songs. Both Cheryl and I noted that she seemed to know the dance moves before the actors even did them so somewhere along the way Molly has seen the movie. Not sure where though? We made Spencer promise that he wouldn't stop the movie half way through and start another one. He is famous for that. Being the gentleman that he is, he watched clear through until the end with us! Not surprising that he did not get up and dance with Molly however :) Thanks for the fun night Cheryl and Spencer.

Next up: the new Star Wars movie for Spencer. He deserves an action movie now, right?

"Calling Invisible Women"

Have you ever read a book that brought immediate clarity to your life? That happened to me over the holidays. A friend loaned me a book that she had really enjoyed and thought that I might like it too. "Calling Invisible Women" by Jeanne Ray isn't a thick book, nor is it intellectually stimulating, but it sure hit home. The opening scene is a mom of two kids (one who is off at college and the other who has moved home post college) as she is looking in the mirror first thing in the morning. She suddenly realizes that she is invisible! She can still brush her teeth, feel the dog licking her hand, and the outline of her body is apparent due to the robe that she is wearing. But she can't see her body.

The kicker? NO ONE in her family realizes that she is invisible. She cooks for them. She talks to them and not even her husband realizes that he can't see her. Everyone goes about their lives like it's normal.

Turns out that it's a unique combination of taking an anti depressant, a bone density supplement and a shot of Botox every now and then that is causing this phenomena. Women across the nation are disappearing but no one knows what the cause is until a bunch of them stripped down and held their invisible support group meetings at a local hotel conference room (that they didn't have to pay for since no one could see them). Here they debate and share and come up with the reason they are disappearing and create a strategy to get the pharmaceutical company to admit that they know they are doing this and yank the drugs from the shelves. There are great scenes as women start using their invisibleness to their advantage by creating good in the world. One goes to a high school and stops kids from bullying, one stops a bank robbery, another goes and observes her husband at his busy medical office and has a new respect for how exhausted he is when he comes home every day. The possibilities really are endless!

Those of you moms in this mid life phase will get a kick out of this book too I think. It resonated for me and gave me that AHA moment of clarity that I too feel invisible (without that particular combination of meds. My wrinkles still exist). As the kids are older, they push us away and don't need us as overtly as they did before. Suddenly, I don't know who I am and what my purpose is now. After 20 years of being a massage therapist and helping others to feel good, I let my license expire and don't have that validation in my daily life. Cooking and cleaning and keeping our family life on track just isn't that fulfilling for me. I wish that it was but I need a sense of accomplishment and a sense of giving back to the world to feel successful.

So I'm taking action and I committed to it via our annual holiday video card. We started this years ago after Brooke had lost his job and we couldn't afford to send cards. Creating a video and emailing it was free.....and the tradition has continued.

https://www.youtube.com/watch?v=m2Zn2W4NWTI&feature=em-share_video_user

You have encouraged me for years now to publish chapters from this blog. So I am officially taking the steps to make that happen. I don't personally know a publisher but maybe you do? I'll also research self publishing as I know that is an option too in this modern day and age.

As I look at the stats from which posts were most interesting to you, it is clear that Molly's dating life with Spencer draws you in. So those chapters will certainly be included. Is there anything else that you are curious about that I can address? I am open to suggestions!

Happy New Year friends and Cheers to becoming visible in 2016!