A Victorian Holiday

I started working with the Northwest Autism Foundation as a Program Director a few months ago. It’s an incredible organization with great people focusing on autism prevention, treatment and research. I decided to reach out to past donors as a combination end of year appeal and to get people to reserve tables for our Autism Gala in April. I wanted to send them a holiday remembrance that was handmade, thoughtful and heartfelt.

I knew I had found the perfect project when I stumbled upon Victoria’s Art Visions blog. She made a project with Victorian photos and angel wings on blank puzzle pieces that was truly inspirational.

This craft has many steps, but are totall worth the time and effort. You will need:

 

Large blank puzzle pieces

Decorative napkins

Old photographs (2″ head shots)

Small squares of cardboard

Sheet music for wings

Various holiday scrapbook stickers.

ModPodge and Elmer’s Glue

Drill

Ornament hooks

This project is pretty straight forward. ModPodge is used to decoupage the puzzle pieces with decorative napkins. Holes were drilled. Wings are cut out from sheet music (I have a digital cutter, but there are ready-made alternatives) Photos were sourced from Pinterest .

The best part about this project is that it was simple enough that I could enlist help from my kids, including my daughter’s friends from Thomas Edison High School.

 

The results were pretty spectacular, and I can be proud to share this with our donors, and hope they know how much old-fashioned love went into these!

 

 

And, if you are in the giving spirit, why not check out the Northwest Autism’s Site: http://www.autismnwaf.org/

 

 

 

Seasons Greetings!

All the Best

“Marion deserves MORE than the best. All the best, and then more of the best.”

Paul’s Hands on map

Those were among the last words that  Paul, my father-in-law, impressed upon me during his last few days of life. He had survived a long battle with dementia, only to be thwarted by a broken hip and his mind’s inability to comprehend that he was indeed lame. It was heart wrenching to experience.

Left in the wake was his confusion was his wife of over 70  years, Marion. Marion is so much more than more than a mother-in-law to me. She is my cohort  my confidant, my sounding board…. she is a second mother, and a dear friend. When Paul passed away a few weeks after his fall, our family was faced with a decision: Where should Marion go? She can’t possibly continue living in their home by herself?

I knew that the best answer was to move my mother-in-law into my home. It just made sense: my career as a social media consultant and community builder makes it possible for me to work from home, and therefore be available to help out my mother-in-law as she goes through her day. As an aside, I was already familiar with the day to day responsibilities of the basic needs of my in-laws, as I’d been helping with their day to day care full time for a year already.

So, it made perfect sense to move Marion in with us. We could love her up family style, and she would benefit from our exuberant and family oriented lifestyle. The biggest hurdle was our pets. Marion gave birth to 7 children during her lifetime, and as a result, she had no  room in her life for pets.  The thought of her living with my over-friendly cats and nervous (large) labradoodle kept me up several nights. Finally, I decided that we would just all have to get along, and accept the challenges along the way.

Long story short: Marion moved in. and guess what? From the night she moved in, she had the best sleep she’d had in years! My husband over-planted our deck with cascading mounds of flowers, and we placed her special recliner at just the perfect spot in our family room so that she could take in the splendor of our territorial view and the amazing summer flowers. We spent our afternoons in the warm sun with big band music in the background, and drank out of her best crystal every afternoon while toasting to each other and spoiling our dinner by eating luscious fattening hors d’oeuvres. Some nights, Marion choose to only eat ice cream for dinner, and who were we to deny her 92 years of experience? She called our home “The first layer of Heaven” and we knew we had succeeded in providing her with the loving environment and care that we had promised to Paul.

The rest of the story is still too painful to remember and soon to tell, but I can tell you that there is nothing like the feeling that comes from knowing that you’ve given your loved ones better than the best.

Crowd-sourcing my Vanity

What’s a social media gal to do when faced with choosing a pair of eyeglasses? When in doubt, blog it out!!

Comment below your favorite eye glasses. Wanna try a pair yourself? I loved the handy dandy webcam functionality at Coastal.com

Ch-Ch-Ch-Ch-Changes

Life just has a way, doesn’t it? Zips on by and we just keep rolling along. My latest challenges include my oldest boy moving home, a brief hospital stay for a suspected  appendicitis that turned into an oophorectomy for me (my ovary did it’s interpretation of Swan Lake) and caring for my 92 year old in-laws on a daily basis.

Moms just have a way of caring for the world, don’t we? I can’t complain though. So lucky to still have my in-laws around in their 90s. Lucky to have a boy who actually wants to move home in his mid 20s.  Almost 40% of caregivers are caring for under-age children…I’m in that camp. It’s not without it’s daily challenges, and there are days I want to tear my hair out, but I remind myself that taking care of your elders really is a privileged  I so enjoy my talks with my very with-it mother-in-law, and I find it especially amusing to watch her absorb new media. Last November, we did a FaceTime call with my son while he was in Denmark. You’d have thought she was watching the man on the moon for the first time.

 

 

My 2 Days in Seattle

It was a bold strategy… invite 30 of the West Coasts largest social media influencers to your city, put them up in a nice hotel for 2 nights, give them cash, and let set them free. No restrictions, just an all expense paid trip for 3 days and 2 nights in Seattle.

I couldn’t believe it when Klout informed me that I had been chosen for a Klout Perk sponsored by the Seattle Visitors and Convention Center Bureau. The SVCC decided to host some of the most influential people on the West Coast, in hopes of luring nearby people to spend 2 days in Seattle. They have a website dedicated to following the tweets of the selected curators. I was categorized under Music, Arts & Culture, and it was great that @SeattleMaven served as the cyber hostess: serving up points of interest to any of us who checked in or tweeted around Seattle. She even hooked me up with Seattle Mariners tickets!!

Our room at Hotel Andra was spacious as well as gracious,

We were put up at the Hotel Andra … I never would’ve guessed that a boutique hotel could deliver such quality service and quiet rooms. We usually stay at the Hyatt, but I can see us returning to Hotel Andra in the future…it was that lovely. The hotel staff greeted me with 2 VIP tickets to see King Tut at the Science Center, a nice welcome note and an invitation to contact them if I have any questions. We were located perfectly between downtown and Belltown, so we were able to walk or bus anywhere. The weather was typical….socked in with fog in the morning, and lovely in the evenings.

Lola was a great restaurant with a Greek inspired menu.

And the food? I’m so used to Portland being a foodie city that I forget that Seattle also has a wonderful and diverse food scene as well. From chowder at Ivar’s to breakfast at Etta’s and everything in between, we never missed a meal, or a cocktail hour!! Stumbled upon the series of Tom Douglas restaurants, and ate our way through half of them over the weekend.

We were instructed to turn on our location device on our smart phones, and to tweet with the hashtag #2daysinSeattle. It allowed them to track us and also allowed us to see where other influencers were in the city.

But, pictures speak louder than words…. check out my visual tweets here.

Why I can’t stand Fifty Shades of Grey

I finally did it. I caved.

I downloaded the ubiquitous “50 shades of Grey”. I wanted to see if it lived up to the hype. I’ve heard the media rave about this racy trilogy. To be honest, I found it completely unbelievable and ridiculous.

Not because it’s written from the point of view of Anastasia Steele, 24-year-old virgin  who falls for Christian Grey, a 27-year-old self-made gazillionaire who owns a corporate dynasty while also learning to pilot helicopters and who has a penchant for the BDSM lifestyle (Google it if you don’t know what ‘m talking about)

Not because it is basically Twilight, with Subs and Doms instead of vampires and werewolves….

Not because it reads as if written by a high school girl, with a few big words thrown in here and there, meant to impress: yet falls short of the mark. It’s badly edited and the cadence often feels rushed. The characters are rather one-dimensional, and if I never the words “mercurial” or “inner-goddess” again I’ll be grateful.

It’s mommy porn. A  guilty pleasure. A Harlequin romance novel on steroids.

But this is not why I find Fifty Shades of Grey unbelievable.

The reason I find it completely unbelievable is because we are to believe that the heroine of the story, Anastasia was able to make it through college at  WSU in Vancouver, Washington without a laptop or a cell phone…. really? What parent in 2011 sends their child away to college without a laptop? or a cell phone? Completely unfathomable. In  fact, a recent study points to full time college students owning both a laptop and a cell phone, with 35% of college students owning 2 laptops. So when Christian Grey gifts Anastasia Steele with her first laptop and her first cell phone, I found the rest of the novel impossible to read. I don’t care how steamy it is or how dreamy they are.

As an added treat, I give you Ellen DeGeneres reading 50 Shades of Grey:

Related articles

• ‘Fifty Shades of Grey’ still popular due to shock factor (examiner.com)
• ’50 Shades of Grey’ becomes fastest-selling paperback in Ireland and UK in just two months (irishcentral.com)
• These 13 Companies Are Benefiting Most From ’50 Shades Of Grey’ (businessinsider.com)

So many questions, So little time….

I was just the subject of a college paper my boy’s girlfriend had to write. Nothing like being under a microscope ! I’m posting the questions and my subsequent answers because I’m thinking it may just be a great jumping off point for discussion:

1.What are some of the challenges you have faced as a parent?

Being the mother to a special needs child with health issues is by far the most challenging part of being a parent. Knowing just how much leash to give your kids, and how not to swoop and smother them as they find their own way is an ever-present challenge.

2. Have you ever received any type of parenting education?

No. We didn’t even go to lamaze classes 😛 Which is fine, because there is no set of rules when it comes to parenting…only guidelines and case histories. When I first came home from the hospital with my special needs baby, I ran to my bedroom to pick up my dog-eared copy of “What to Expect When You are Expecting” ….. only to find a brief paragraph on what to expect when one gives birth to a special needs child…. the paragraph told me to seek professional help elsewhere…. so much for baby books!

3. How has parenting changed as your children have grown and developed?

Not sure how to answer this one…. parenting perceptions have changed societially (i.e. Tiger Moms vs. Baby Wise, etc….) But I’m not sure how my own personal parenting style has changed. I suppose my role as a parent has evolved from primary care giver, to primary first aid boo-boo kisser to primary philosophy giver, taxi driver, and finally primary loan giver. I look forward to the roles changing up again to friend, babysitter, and finally child to my children…..circle of life.

4. Did you have accurate expectations of what it would be like to have children before you became a parent?

I believe so. I was prepared for the work aspect , but I did underestimate how much joy I would feel as a mom raising fun kids.

5. How do you balance family life with your other interests/jobs?

I gave up a successful career as a performer to raise a family. In order to keep my life in balance, and keep a “hand in” I do an occasional symphony performance or drama or recording gig just to keep my skills in check, and to keep me from feeling like I never get to do what I want to do anymore. I do one big show every other year.

I also run a Social Media marketing boutique out of my home. It allows me to work from home and still go on field trips or make the occasional frantic run up to school with a forgotten assignment or lunch. Best of both worlds!

6. What kind of support do you receive from family, friends, schools or the community as a parent?

Because I live so far away from my family (my parents divorced and I was moved away from the midwest in my teen years) I did not have the usual benefits many of my peers had raising their kids. My in-laws are 40+ years older than my husband, and they were not viable grandparents to help raise our kids. Both of my sets of parents live too far away to fill the typical grandparental roles, so my husband and I had to wing it when it came to baby-sitters and weekends away from the kids. My kids don’t know any different, but I do. I grew up spending every weekend at a different set of grandparents…my grandparents literally fought over who got to watch my brother and I as we grew up.

As the parent to a special needs child, I was amazed at the amount of support the Early Childhood Preparatory programs Oregon had for Caitlin. From the time she was 2 weeks old she was eligible for services, and was regularly visited by nurses who checked in on her, gave her physical therapy and helped me navigate through the public schools.

7. Is there anything you don’t like/don’t enjoy about being a parent?

I tire of the monotony of cleaning… It’s a never ending conundrum. I bore easily with volunteer moms at the school who complain about their husbands. I hate neighborhood gossip. I hate having to play momma bear to my special needs child, as I continually watch parents leave my child out of other reindeer games.

8. Has your philosophy on child-rearing changed as you have had more than one child?

I don’t believe so, but I’m sure it did. I often joke that my bonus child (my step-son from my husband’s first marriage) got the best version of me as a mommy. I was all of 25, just did a year as a theme park princess, and knew all the best ways to engage a young kid. I had patience for days and knew better than to push my luck, as our relationship was more environmental vs. biological. I literally spoiled him into submission, using treats as both motivation and reward. I also had to be ultra careful not to do anything that might be controversial. For example, if he had a nightmare and wanted to crawl in bed with his daddy, I would immediately leave the bed and go sleep on the couch, because the divorce was anything but amicable, and I needed to make sure that nothing could be twisted in a way that would hurt my husband’s time with his son.

My first born, got a more maternal version of me…we co-slept for the first year (much to my in-laws dismay) She was my shadow, and still is, at 14. She never left my sight in a mutual way.

And my youngest got a much more pragmatic version of me. With all of her health issues and brain delays, we navigated the world much differently…. much more cautiously and with purpose.

But….really, I think it is that each child brought something different to the equation, not necessarily that my child-rearing changed….For example….if Kelly as a toddler ever broke free and started running down the street, she would always look back and make sure I was chasing her. Caitlin, on the other hand….NEVER looked back. I was paranoid that Caitlin would go home with a stranger, because she just didn’t know any better.

9.What is your favorite part of being a parent?

There is a sense of accomplishment when I feel we are parenting well. It’s not always the case, but when we are sitting around the table talking over dinner and I see/hear the processes we’ve put in place working, I feel great about always putting my family first.

10. Is there anything you would change in your child-rearing if you had another child?

I’m not sure I would…..I’m sure there is something…..I would try and get help to be better organized, so that I could pass organization on to my children.

11. What are 1 or 2 pieces of advice you would give someone before they become
parents?

Go do everything you want to do in your life….travel, experience, do, be… make sure that when you have kids it is because you can’t imagine life without them, not because you think it’s time to go down that road. Don’t put an age on parenthood. I wanted to be a young mom…. I now wish I’d waited a bit and travelled/experienced more.

12. What has been most rewarding part of being a parent? What do you get out of being a parent?

I have front row seats to the best reality show on earth. With a vested interest in the characters, and a cameo role here and there 🙂

13. Is there anything you’ve learned about yourself from being a parent?

I’ve had to deal with my parent’s shortcomings along the way. I realize now that my parents did their own personal best as parents, even if they hit well short of the mark sometimes. My youngest daughter is so much like myself that I find her especially revealing to me. Also, she is brutally honest with me about my own shortcomings…sometimes comical, and sometimes not so much….

14. How has your relationship with your spouse changed as you both have parented?

He was a parent when I met him. So it’s not really a fair question. I was attracted to my husband because of the father he was to his son. I did my best to step in and compliment his methods, and became an instant parent the moment I committed to being with my husband.

15. Do you want to have more children?

I did. I will always wish I had more. But when Caitlin was born with multiple midline birth defects, I knew it would be unethical to bring another child into the world. A second special needs child might have stretched my parenting resources to the brink, which would not be fair for anyone. I always wanted to get the last one out of diapers before I tried for another one…..still waiting….

Now it’s your turn. Yes, YOU! ….what were your greatest challenges you’ve faced as a parent?

A Room With a View

So, last week was one that brought me to my knees. My daughter needed open-heart surgery and I was the powerless mommy with no choice but to throw it up to my faith in God and my daughter’s surgeons and medical staff.

So what’s a social media mommy to do? I tweeted about it all, of course. Starting with checking into the hospital on foursquare. Then posting daily updates and photos on Twitter, Facebook, Instagram and Google +. It was one small way for me to inform friends and family of my daughter’s progress, while giving myself a brief escape from reality. I was sure to include the hospital’s Twitter handle on each tweet. And they obviously paid attention.

When we were moved from the Pediatric Intensive Care Unit, we were moved to a corner room. Not just a corner room, but the corner room with the best view. View to the helipad and city view kinda view. I of course tweeted, Facebooked and Google+’d my joy. This was originally dismissed as coincidence, but appreciated nonetheless.

But as night fell on the floor, I found out that there was a downfall to having the corner unit. It happens to be across the hall from a staff bathroom. The staff bathroom next to the window with the best view. The coveted staff bathroom that everyone evidently wanted to use. and use it they did. Several times an hour. It was around midnight when I realized that it must be the loudest flush in the history of toilets that flush. Of course, this was tweeted, RT’d and…. all around 4am.

Another thing happened around 4am that night. I realized that I had slept through my daughter’s medication dosing. And, while I was fairly certain that her pain medication had been given, I couldn’t be sure. In the old days, I needed only to look outside her room at her chart to see when and what her last dose was. But, in this new digital world, all medical files are kept securely online, and even I don’t have access to my daughter’s medical records. I didn’t even have a record of who her night nurse was, because she hadn’t written it on the white board after the “Your Nurse is…”   This is still troubling to me. there should be a phone app or a place online I can sign into to find out when my daughter’s medications were given and by whom. Why is it I can find out the exact status of my Domino’s Pizza online, but I cannot find out who my daughter’s nurse is or when her last pain medication was administered?

The next morning I was visited by the charge nurse who asked me if everything was okay. I initially said, “yes” and then she said “I heard you didn’t sleep well last night….” from there I realized that they were reading every tweet, whether they were tagged in it or not. It lead to a very healthy dialog about a parent’s role in their child’s stay in a hospital, HIPPA rules, and how this very new wing of a children’s hospital might better communicate with families. She offered to move me to a new room away from the staff bathroom, and I said that really wasn’t necessary, as we appreciated the extra room and moving us to another room would only put me in between two patient rooms. It should be noted that not a single staff member used that particular restroom for the remainder of my stay. Don’t tell me there is no real power behind Klout….

I’d love to team up with an app builder and make an application that would act as a medical advocate for a patient, or the patient’s caregiver…. anyone wanna join me?

Parental Guidance Suggested

As a mom, there are many things I am equipped to handle. I can handle almost any kind of owies, I can kiss things to make them better, I can scrub up after a myriad of messes, and I can even handle teenage outbursts of many sizes and shapes. But when my youngest daughter looked at me with tears in her eyes and said;

” Who will be waiting for me when I get to heaven?  How will Grandma in heaven know me if  I’ve never met her?”

My youngest needs open heart surgery, and the date was set for mid June. After several nights of her waking up crying and asking questions of her mortality, I decided to call in the pros. This was outside my level of expertise, and I knew it.

I contacted her pediatrician, who prescribed a mild sedative for sleeping, as well as  the Child Life therapists over at Randall Children’s Hospital, where her open-heart surgery was scheduled to occur. Then I called her cardiologist and let them know that my daughter was having severe anxiety about the pending surgery, and asked if it was possible to move the date of the surgery up a few weeks.

The receptionist at first was reticent to pass this information along, telling me that she was sure there was a reason behind the doctor’s timeline for the surgery. I made it very clear to her that I was the one who chose the last week of school, and now I wanted Dr. King to know that I’d like to reschedule it for his earliest convenience, if that was possible. I was firm, yet polite in stating my wishes.

And it paid off. The child life counselor gave my daughter an all out tour of their new children’s hospital, including some great play therapy, where she could pretend to give her doll an IV and did a play acting surgery exercise, while explaining every step along the way. I dare say, my daughter left with a much lighter heart, and seems to be looking forward to her week at the hospital.

I was able to move up her surgery as well. Instead of waiting a month, we only have a week to go. Because I informed the surgeons of her anxiety, they were able to combine two surgical procedures originally scheduled to be spread out over 2 weeks into a one time back-to-back situation….so she will only need to check in and out of the hospital one time.

The lesson here for others is this: as a parent, it is up to you to advocate for your child. Before Caitlin was born, I was of the mindset that doctors knew best, and I followed their recommendations to the letter without question. By speaking up for Caitlin, I was able to let her doctors know about a situation they would not have any other way of knowing. This is the kind of knowledge that doctors need to know, and yet so many of us just go with the flow and don’t think feelings have any purpose in diagnosis and treatment.

It’s not the first time that I’ve been polite, yet firm, with my daughter’s doctors. I have fired pediatricians for not returning phone calls in a timely fashion, or for not speaking English clear enough for me to understand. I have switched specialists  when I had the feeling that Caitlin’s  first cardiologist was a just a little too tan for Oregon standards, meaning that he spent too much time golfing and vacationing vs. studying his craft. I want my specialists to be nutty professor anti-social types, thank you very much. Even when we were on the Kaiser Permanente insurance, I exercised my right to change physicians regularly. Every hospital has a patient’s rights advocate…. don’t be afraid to get to know them. And don’t be afraid to let your children’s doctors know about all aspects of your child’s health… including stresses. You are you child’s best advocate, and ultimately you are your child’s primary care AND specialist.

We just told Caitlin that her surgery is only a week away, and she smiled. She’s off the sleeping medication, and is excited to check in and start her adventure.

Objects in the Rearview Mirror…..

This Blog started out being about Mommy stuff…. then it moved to Social Media Stuff….. and now It’s about to change again.

My youngest daughter (12) needs open heart surgery. This is changing the focus of my life, and consequently this blog. I will be moving all social media related posts to my social media blog :

This blog will move back to its roots and address the challenges of raising kids with special needs. I apologize for the confusion. I may not even post publicly on here for a while, as the posts may prove to personal and painful for my family. I’m hoping that a year from now I can publish many posts on my daughter’s experiences, from diagnosis to prognosis and finally to health. I think writing the posts as they happen and publishing them later will prove to be the best compromise.

In the meantime, anyone know the most economical way to get my family to Disneyland in May? Hoping to make that happen!! (crosses fingers)