CCA Kids Blog

#CCARetreat2025 Seattle: What To Do and See

noreply@blogger.com (KMJ98) — Mon, 26 May 2025 15:47:00 +0000

CCA is headed to Bellevue, WA for this year’s retreat. Beautiful Bellevue is located about. 20 minutes away from Seattle, WA home diverse offerings sure to pique everyone’s interests. Personally, I am excited about learning more about the origins of alternative bands from the 1990s like Nirvana, Peal Jam, among others that brought the Seattle sound to the nation. Once again, I am Kara, your favorite travel guide for the best weekend of the year. Are you ready to have some fun?

Take Flight
While music may not be your bag, there are plenty of other fun things to explore while in Bellevue and Seattle. One big one for many of our CCA friends will undoubtedly be The Museum of Flight. I am not nuts about aviation. It kinda freaks me out. However, I am really into space flight and outer space. Yes, I know it doesn’t make sense, but as I often quote the great Walt Whitman, “we contain multitudes.” Enough about me, and back to the planes, the Museum of Flight has a featured exhibition called Apollo where you will be able to see the F-1 engines that powered the Apollo and Saturn space missions. In addition, there is 737 Airliner Theater, Vietnam and WW1 and WW2 planes used in war, and a number of interactive exhibitions to better learn more about the world of flight. The museum is located at 9404 E. Marginal Way South, Seattle, WA, admission is $29 for adults, $21 for youth 5-17, and children 4 and under are free. Tickets are available for purchase online. Special exhibitions may require an additional ticket fee.

Art & Science
Next up for all my fellow artsy friends, there is the Chihuly Garden and Glass. Artist, Dale Chihuly created some of the most iconic glass sculptures, lighting fixtures, and more over the course of his career. He studied at the University of Washington and began working with glass while studying interior design. On the grounds of the museum, there are galleries, gardens, glasshouse, and theater to explore. The museum looks like a true treasure seamlessly blending the outdoor and indoor spaces. You can combine admission to the Chihuly Garden and Glass with admission to the Space Needle, the 605 ft tall spire at the center of the city of Seattle. The observation deck and rotating restaurant is located right next door to Chihuly Garden, the Seattle Children’s Museum, Pacific Science Center, and Willard Smith Planetarium. For $68, adults can go to see beautiful Chihuly glass and get the best view of the city at the top of the needle. Regular admission for ages 13 - 64 is $68, youth ages 5-12 is $63.

Food, Art, Sculpture, and History
Other places worth exploring, include Pike’s Place Market. A spot featured in many a movie and tv show featuring famed fish-throwing seafood vendors, produce stalls, and other shops. Nearby the market is the Seattle Art Museum and nearby Olympic Sculpture Park. At no cost at all, the park overlooks the Salish Sea, and boasts a pavilion, and MARKET at the Park which is open Friday through Sunday from 10AM - 2PM, and what I can only describe as a ginormous, artsy, indoor greenhouse called Neukom Vivarium. For the more adventurous, and amateur spelunkers among us, the underground passageways attraction below Pioneer Square, Beneath the Streets is just for you. Explore this underground system of tunnels that lay below one of the oldest parts of Seattle. My friends at Viator can bring back in time and below sea level for $29.00 a person.

Pop Culture
Finally, (well I could go on and on, and there is more below), one may want to check out the Museum of Pop Culture, where you will get to see artifacts from your favorite bands, horror, sci-fi films and more. Current exhibitions boast an indie game revolution, infinite worlds of science fiction, an expansive guitar gallery, and the sound lab where you can mix up your own tunes in an interactive exhibition space.

Irreverent Fun For All
Finally, (maybe, we’ll see...) on the more quirkier side are these suggestions found on this really cool site, AtlasObscura. I think I speak for some of us when I say we all need to go check out the gum wall, a wall of chewing gum that is a collective art project. You can find it at 1428 Post Alley in Seattle. If chewed gum isn’t your thing, maybe the Fremont Troll may tickle your fancy. Well most likely he won’t be doing much of anything as he is 18 ft tall and made of concrete. Created in 1990 for the Fremont Arts Council competition for designs to improve freeway underpasses, the architectural wonder has been there ever since. You can make your pilgrimage to visit the Fremont Troll at 3468-3696 Aurora Ave N. in Seattle. There are many, many more suggestions for wacky and wonky sightseeing at atlasobscura.com for Seattle and almost every other city you may be visiting this summer. Peep the Seattle Meotropolitan Cat Cafe. It looks like it's a winner if you like cats and coffee.

Explore and Build Your Memorable Visit
There is so much to explore in Seattle. I feel like I did the outdoors a great disservice. Mount Rainier is nearby, whale watching is also available to folks who may be so inclined. Check out the Visit Seattle website to explore restaurant suggestions, additional attractions, and for anything I may have missed.

CCAAnnualRetreat2025: Getting Around Bellevue Washington

noreply@blogger.com (KMJ98) — Sat, 24 May 2025 23:16:00 +0000

I am quite excited about our long weekend together in Bellevue, Washington, just a stone's throw from Seattle, Washington. This blog will share information about how to get from the airport to Bellevue, and how to move around the area that surrounds the hotel. Hope this helps you get around, locate some grocery and pharmacy basics to help make your trip to the Pacific Northwest a smooth one.

From the Air to the Pavement, How to Get to Bellevue After You Land

Let’s start with what happens once you land. Ground transportation is important. There are the usual offerings which include your preferred ride share app, taxi service, or rental car. A cost effective alternative is the $30 Bellevue Airport Shuttle. The shuttle runs every hour from 7:00AM - 10:00PM local time. It will bring you to our hotel, the Hyatt Regency, and also provides rides to other hotels. You can board the shuttle by going to the third floor of SEA-TAC airport, and take the skybridge to the garage. Continue to the hotel shuttle area and go to Island 2A (between skybridge 3 and 4) designated as “Hotel Shuttles” on the signage. The only downside I can see with this service is that it lacks accessibility for individuals in wheelchairs. Learn more and book your ride here.

Ground Transportation Around the Hotel

Once unpacked and settled in your room, you can explore Bellevue by using the free, electric transportation service called Bellhop. The electric shuttle runs along a 6-mile perimeter bringing passengers to local hotspots, like the Bellevue Botanical Gardens, Kidsquest Children’s Museum, and Meydenbauer Center. The shuttle runs Mon – Thursday – 7:30 – 9 pm, Friday – 7:30 – 10 pm, Saturday – 10 – 10 pm, Sunday – 9 – 9 pm. Download the Bellevue Bellhop app, called circuit, to learn more about how to get on board to get out and about.

What to Do in Bellevue?

If you want to stay on foot, and have a luxurious lunch and shopping experience, you should visit the Bellevue Collection. Department stores, your mall favorites, plus coffee shops, and restaurants for lunch and dinner can be found here. Notable among the offerings are Cheesecake Factory, West Coast Tacos, a mocktail bar called Club Seltzer and a few coffee shops, DOTE Coffee Bar, and Woods Coffee. There is so much to explore as far as shops go as well. Flagship stores include Nordstrom, Macy’s and span the alphabet from Athleta to ZARA. Truly an elevated shopping experience awaits those who are so inclined to shop till they drop, or maybe just take a window-shopping stroll.

If you are more of an outdoors person, Bellevue and the Seattle region have spectacular green spaces. Nearest to the Hyatt is the Bellevue Downtown Park. This accessible park has playground equipment, picnic areas, and a 240-foot-wide waterfall. This area looks like a wonderful place to explore and enjoy the outdoors a bit.

Groceries, Pharmacies, and Target Runs

For groceries, and some of the bare necessities, there is a Target at 272 116th Ave, NE and a Safeway grocery store at 300 Bellevue Way NE. The Safeway has a pharmacy and there are also CVS and Walgreens Pharmacies in the same area. I also saw there was a Trader Joes and Whole Foods nearby for those os us with special diets. Stock up on water, bandaids, and snacks so you can fuel yourself through the fun.

7 Speech Therapy Apps to Download Now For At-Home Practice

noreply@blogger.com (KMJ98) — Wed, 29 Jan 2025 01:42:00 +0000

By Kara Jackman

Whether you are practicing at home or must stay at home because of COVID-19, speech therapy will always be part of the lives of our craniofacial kiddos and kids at heart. Here are some great pronunciation pathways to pursue (say that five times fast!).

Smile Train Speech Games (Available in Apple

App Store and on Google Play)

Starting with simple, free, and reputable, Smile Train’s Speech Games app is a good one for every day practice. Based on the letters needing some extra love, you are presented with either a story or a game to play that utilizes these letters. The images are not animated for the stories, but the words are displayed on the screen and your child will be able to advance the story on each screen. You can read to yourself or listen to the story read to you. There are six games per each sound that range from learning the sounds, to practicing syllables to memory, and a “drag the word” word building game. Simple, free, and efficient this is one app to have on your phone or tablet at all times.

SpeakEasy (Available in Apple App store, Android, Google Play)

SpeakEasy

SpeakEasy is a slightly more robust app that allows you to tailor usage to your child’s needs. Both caregivers and speech pathologists can make use of this app that helps children from ages 0-5 years old. Kyla from SpeakEasy told us more about the app, saying, "We currently have material for 0-5 years old, offered in 4 stages (preverbal through full sentences). We do not focus on age, but rather training parents and caregivers, offering ideas for simple activities they can do at home." This strategy helps reduce screen time for your kiddos. This app is pay-to-play at $19.99 per month, $9.99 per month when billing annually ($119.88/year). SpeakEasy was developed and maintained by a husband and wife team that work together to provide a high-quality product that could be a great fit for your family.

Otsimo Speech Therapy (Available in Apple App Store and Google Play for Android)

Otsimo Speech Therapy is a comprehensive app that features development of motor skills for the mouth and lips and speech skills, too. A variety of consonants, words, phrases are featured for practice. Caregivers may choose to coordinate with their speech pathologist, setting the curriculum by answering questions in the developmental test to customize your child’s practice and track their progress. The report generated will give you a regular practice schedule that takes into account your child’s age and attention level. You may create an account for more than one child. The exercises allow your child to watch their peers speak as they offer three different vocalizations or pronunciations for letters, words, and phrases. Then the child will enjoy a little fun with a funky filter selfie, practice their skills once more, and finally play a quick and easy game. The app features cute animations, videos of real children speaking, and the ability for your child’s voice to be recorded to ensure their diction is on point. The app boasts that your child will see progress in just 6 months. The app is backed by University of California Berkeley and the University of Edinburgh. Otsimo Speech Therapy is available for download on IPhone and IPad via the App store. Premium features require a subscription. You can subscribe for $6.99/month, annually at $4.49/month, or lifetime at $115.99. Learn more about how it works on Otsimo's blog.

Speech Blubs Pricing
Speech Blubs and Speech Blubs 2 (the updated version of the original app is available in Apple App store and Google Play)

Speech Blubs comes highly recommended by a wide variety of parenting magazines, speech pathologists, and medical organizations for being fun and effective. Speech Blubs’ dynamic presentation is second to none and worth the subscription tiers of: $14.49 per month, $59.99 for an annual subscription, or $99.99 for a lifetime license. Audio and a dynamic presentation keep your kids engaged while they improve their speech and language skills. A caregiver or parent provides information about the child’s speech therapy needs, including a comprehensive list of diagnoses, noting if they work with a speech pathologist or not, and their level of social engagement. The Speech Blubs app then generates a free personalized report with a full assessment, including tips and tricks on speech and language development. The personalized report informs the words and sounds your child will practice in fun subject areas like animals, shapes, and family fun. Users will also be able to mirror the way the actor on the app’s video moves their lips to speak the words or make other sounds. Children as young as one year of age can start with animal sounds, and then scale up to words and sentences. There are also songs, games, and a section that helps children understand their emotions and how to express them. As a reward, kids can create photos with filters or play games. The filters will have you and your kids entertained for days. Save photos to your photo album and share with your CCA friends!

Speech Blubs 2 Allows Kids
to see others say words
and sounds

Speech Blubs 2 is the updated version with an expanded offering of videos and enhanced personalization. Kids can see themselves perform in the “videos related to the words and concepts they are learning,” say the Speech Blub developers in the description of this brand new app.

SmallTalk and Miogym: Speech Apps for motor and mechanic support (Both available through Apple App Store)

Aphasia Communications has a number of excellent apps to help those kids that have difficulty expressing themselves through speech. SmallTalk Aphasia Female/Male developed by Linographica will help your older child or adult “learn common words and phrases used in everyday situations, like meeting someone for the first time, telephoning someone, or ordering at a restaurant.”

Miogym

There are videos that demonstrate how to move your mouth to make sounds and words. The app also acts as a communication tool. For instance, it can inform people that you have aphasia, survived a stroke, or have trouble speaking. The user need only to hold up the app to share with friends, family, and medical providers. This app opens the world up for those that experience speech delays or have an inability to communicate with spoken words. The app comes in both male and female voice versions. Aphasia communications has a number of other apps to explore and improve the speech motor skills. This app appears to be free, but be aware that could change over time.

Similarly, Miogym helps toddlers and children develop proper motor skills to make sounds and words. The app begins with first sounds, “a collection of exercises that helps children begin to make their first sounds,” say the developers, including animals, trucks, cars, and more. Pronunciation of s,r,l,t sounds are the focus. Understanding and honing the ability to make the mouth move properly accelerates speech development which is the next step your child will take in this application. Children with the diagnoses of autism, apraxia, and dyslexia will benefit from this fun, interactive app that keeps them entertained, rewarded with games, and hooked by “leveling up.” Cute videos of kids performing the activities give your kiddo a training buddy as they learn, holding their attention better than a caregiver or other adult. This app is best for ages 2-7 years of age. A monthly subscription is $6.99, and a lifetime subscription costs $69.99.

A Speech App for Autism: MITA - Mental Imagery Therapy For Autism (Available through Amazon)

Like our bodies, all minds work differently, too. No person hears or interprets the world in the same way. Neurodiversity, as we now name it, contributes to our ability to speak and comprehend language. The MITA (Mental Imagery Therapy For Autism) app developed at Boston University helps synthesize the components that affect the different ways in which your child’s mind is unique. The app has brain games that utilize images, audio, and words to assist in the development of the child’s ability to build sentences to communicate things like “the cup is on the table.” It’s recommended to only have the child do exercises on this app twice a day, once in the morning and again in the evening.

Boston University researcher and app developer, Andrey Vyshedskiy, says more about how the app works in a Boston University The Brink research article, “Prefrontal synthesis is the mechanism that allows you to juxtapose several disparate objects. If I ask you this question, ‘If the lion ate the tiger, which of the animals is still alive?’ you are using prefrontal synthesis to imagine the events and answer that question,” Vyshedskiy says.

Without prefrontal synthesis, understanding complex language is impossible, Vyshedskiy says. Today, almost 70 percent of children diagnosed with ASD struggle with language and up to 40 percent of adults with autism have never gained prefrontal synthesis.

“Whenever language is delayed, when children don’t understand stories or acquire internal language, they don’t develop the deeper brain function of prefrontal synthesis,” Vyshedskiy says. “I realized, there might be a way to get at language development through a ‘back door’ in the brain—we developed this digital therapy app to improve language acquisition.”

These are just a few of the speech apps available in most app stores. There may be others that will suit your child’s needs better. Many have a trial period. Take the time to experiment with different apps to see which ones hold your child’s attention and interest. Everyone's needs are different, be patient and find the right fit so they will commit to a consistent practice schedule. Now go out there and have some fun.

ConnectMed Camp Cosmos Virtual and In-Person March 8 Programming

noreply@blogger.com (KMJ98) — Mon, 27 Jan 2025 18:30:00 +0000

ConnectMed International in San Diego, CA has an exciting day of programming for medically-complex kids near and far from Southern California. Please join them on Saturday, March 8, 2025. The Virtual Camp starts at 10AM PT/12:00PM CT/ 1:00PM ET

The day's theme is Marine Explorers for A Day. Participants will be able to immerse themselves in the wonders of the ocean. All events, both virtual and in person, will be inclusive experiences for all that provide support, resources, and fun for youth with physical differences and their families.

The in-person camp for folks local to Southern California begins at 2-4PM PST. The3 gathering will be around Birch Aquarium in La Jolla, CA. More details will be provided upon registration. The deadline to register is Feb 24 (Virtual) and March 1 (In-Person).

Holidays with Camp Cosmos Dec. 14th (On Zoom) & Dec. 15th (In San Diego)

noreply@blogger.com (KMJ98) — Tue, 19 Nov 2024 22:17:00 +0000

Register Here

Join us for ConnectMed International's Holidays with Camp Cosmos. For the fourth year in a row, we will celebrate the holidays with YOU. This year's theme is "The Wonder of Winter Wildlife." On Saturday, December 14th join us for virtual programming with programming for kids, tweens, and teens. Please come deck the virtual halls with us! It is sure to be a great time.

Register Here

Reflections on Retreat 2024 in Baltimore, MD

noreply@blogger.com (KMJ98) — Thu, 12 Sep 2024 01:16:00 +0000

By Christine Clinton

This year the Children’s Craniofacial Association held their 34th Annual Family Retreat and Educational Symposium in Baltimore, MD from June 27th-June 30th. I had never been to Baltimore prior to the retreat, so I was very excited to attend this retreat with CCA. This was my twelfth retreat that I have attended with CCA, so I was so happy to be able to be in Baltimore this year. Some of the highlights that I was looking forward to attending was the Baltimore Orioles game, they played against the Cleveland Guardians, and going to the National Aquarium in Baltimore as well. My friend Melissa and I also went to a seafood restaurant for lunch on Thursday afternoon, and the food was good. I went to the symposium on bullying, and how to manage bullying, on Thursday morning before I registered for the retreat, and got to see what special goodies CCA had for us. I had hoped to be able to go to Evan Wolkenstein’s Keynote as well, but unfortunately, Melissa and I did not make it back to the hotel in time. On Thursday night I went to the retreat kickoff, and entertainment. On Friday morning we had the welcome breakfast, and on Friday afternoon, I was able to see the Power of the Bucket List that Evan also did. After the Power of the Bucket List, I enjoyed baseball bingo. We had a very special surprise with the mascot from the Baltimore Orioles coming to visit us. I got to take a picture with him, which was cool. On Friday night, there was Family Night, with dinner, the hometown raffle baskets, and entertainment. Evan was at dinner on Friday night, and he autographed his book Turtle Boy, for anyone who had their copy of the book with them, and who wanted him to autograph their book. He autographed my copy of Turtle Boy for me, and I got to take a picture with him as well; that was very special. I was able to spend a lot of time with my friends, and meet some of the new families as well. I always enjoy being able to catch up with my friends who I already know, and meeting some of the newer families too. I always feel bad because there is never enough time to meet all the new

families; but I always do my best with meeting as many of the newer families as I can. On Saturday morning, we had breakfast, and then we took the annual group photos. Each of the craniofacial syndromes that were at the retreat took a group photo, and then we took a big group photo with everyone, which was fun. On Saturday afternoon, after lunch, was the CCA’s Got Talent Show. I took part in the talent show this year, I just was not in the audience, I was a participant. I read the Fearless Poem, which I dedicated to the memory of Francis Smith, who passed away last year in October; and I also wrote something that I read as a dedication to CCA. Saturday night was the dinner/dance, and there was a photo booth for anyone who wanted to take their pictures with friends. I always enjoy the dinner/dance, but it is always so bittersweet for me, because I know it indicates the conclusion of a wonderful weekend. On Sunday morning, we had our farewell breakfast, and then on Sunday afternoon, I went to the Richmond Family’s home for a pool party. I had a wonderful time at the pool party, catching up with some of the retreat attendees who were there, and just enjoying the afternoon. I always enjoying taking so many pictures, and enjoying everyone’s company. As always, I am very much looking forward to next year’s retreat. The retreats have become a way for me to connect with others who have had similar life experiences, with having a craniofacial condition. I truly believe that we all need people in our lives who understand what we are dealing with, and going through, and for me, the retreats do just that. Thank you to the Children’s Craniofacial Association for all that you do, for the families and individuals that you serve with craniofacial differences.

Cronin Family Fundraiser, Killin' the Battenkill, Raises $3000 for CCA

noreply@blogger.com (KMJ98) — Tue, 16 Jul 2024 17:30:00 +0000

The Killin' the Battenkill 5K/10K was held this past Saturday June 1, 2024. We were fortunate to have perfect weather for the event held in Arlington VT, which is a short distance from our home in NY. The race has grown every year and this year we had approx 40 participants, and many others who donated that were unable to attend. Everyone was extremely generous and we raised $2,900 for CCA. We were so grateful. The checks are going in the mail to you today!!

Thank you so much for all of the goodies you sent for the race bags. Everyone loved their give-away items. Really appreciate you sending that!! I have attached some pictures of the day. We had a nice post race gathering at the race site with breakfast treats and a post race plunge in the Battenkill River. Couldn't have been a better day to raise money for an amazing organization. Thank you so much for the work you do everyday. We are so grateful to CCA and love doing any small amount we can do to help.

Retreat 2024: To Do & To See & To Eat...In Baltimore

noreply@blogger.com (KMJ98) — Fri, 14 Jun 2024 14:09:00 +0000

There is so much fun to be had (and even more to eat) in Baltimore. Whether you are a history, science, or literature buff, Baltimore has something for you.

Click here to access an interactive version of the map below.

To Do

Playground - Adventure & Nature Play Playground. Just 8 minutes South of the hotel, this playground boasts some cool equipment, shapes, and more. Don't forget your snacks and sunscreen.

There are plenty of things to do in this wonderful city. Nearby I spy a children's museum, science museum, and aquarium all in walking distance. I personally am very excited about Camden Yards and the Edgar Alan Poe House and Museum. The museum dedicated to the author of the Raven and Annabel Lee, is a bit off the beaten path. In addition in Richmond, VA, there is the Poe Museum if you want to go a bit further to get your macabre fix.

For history buffs, there is the Star-Spangled Banner Flag house. Fort McHenry looks like a great place to explore if you like the outdoors, too.

If you are more of an artsy person, there are two art museums that offer free admission in Baltimore, Walters Art Museum and Baltimore Museum of Art. While you are in the area, check out the first monument built to honor our first President, George Washington.

Finally, just because this looks really cool, too, Baltimore is home to the B & O Railroad Museum.

This is not an exhaustive list by any means. There is so much to see and do in Baltimore and I look forward to explore it with you all.

To Eat

This list was verified and amplified by our local cuisine expert, Erin Richmond. Do mind her asterisks flagging family favorites, and notes highlighted in italics. This list focuses on the local delicacy, crab cakes, though we are sure other items on the menus at these establishments are just as delectable.

Peter's Poor House - 111 Mercer Street

3 minute drive
6 minute walk

Phillips Seafood - 601 E Pratt Street (*do not recommend/crabcakes not traditional - small/lots of filler)

2 minute drive
10 minute walk

*Rusty Scupper - 402 Key Highway

3 minute drive
13 minute walk

Watershed - 1065 S Charles Street

4 minute drive
13 minute walk

Nick's Fish House - 2600 Insulator Drive

6 minute drive
43 minute walk

Captain James Seafood - 2127 Boston Street

8 minute drive
39 minute walk

*G&M Restaurant - 804 N Hammonds Ferry Road

11 minute drive

*Jimmy's Famous Seafood

12 minute drive
Local favorite, great atmosphere, big supporter of Orioles/Ravens

*Kocos’s Pub - 4301 Harford Road

16 minute drive
Local favorite, great atmosphere, Doesn't take reservations/large parties difficult to seat at dinner time

*Costas Inn - 4100 North Point Blvd

16 minute drive

*By the Docks - 3321 Eastern Blvd

22 minute drive

*Pappas Restaurant - 6814 Ritchie Highway (other locations in Cockeysville and Parkville that are about 20-25 minute drive)

16 minute drive

*personal/family favorites

Teen and Young Adult Social This Friday MAY 17th at 8PM ET/7PM CT/5PM PT

noreply@blogger.com (KMJ98) — Tue, 14 May 2024 21:53:00 +0000

Join us for another Teen and Young adult Online social. We will play some games, gab, and connect.

Zoom Link

5-6PM PST

6-7PM MST

7-8PM CST

8-9PM EST

Zoom Link

Retreat 2024: Getting Around Baltimore

noreply@blogger.com (KMJ98) — Wed, 08 May 2024 14:54:00 +0000

We are less than two months from the 2024 Annual Family Retreat and Educational Symposium weekend. The most important thing when in a new city is transportation, or finding ways to get around. In a future blog post, I will cover attractions and eateries. I'm excited to explore this historic city that seemingly loves history, open ocean, baseball, and a something a little spooky - the Poe Museum.

Editor's Note: Please talk to hotel staff, concierge, or local retreat attendees to make sure your chosen mode of transportation is the safest choice for where you are headed. At night be sure to buddy up with one or more people before you go galavanting into the night.

Maryland MTA - Public Transit

Public Transit runs from the train station and the local airports. Maryland MTA has a variety of public transportation options from buses, trains, to water taxi. I love that the website has a trip planner option because I like to just cut to the chase and put in my point a and point b, then go. There are also route maps, and so much more. Please also make use of Google maps on your phone to help build your trips from airport to hotel, or hotel to local attraction. Download the CharmPass App on your phone before you get moving.

Charm City Circulator

Everyone knows how much I love free, but you know what I love even more: alliteration. At your service is the Charm City Circulator which runs during the day for free all across town. On the Circulator's website, you can learn how far this free ride will take you, and back, of course. Easily track the wearabouts of the next bus to pull up on the website.

Harbor Connector

Since we are conveniently located in the Baltimore's Inner Harbor, the Harbor Connector (also free, just with less alliteration), seems like a scenic way to get where you are going. Ahoy, maties, the Harbor Connecter runs from 6AM - 8PM, but may stop service due to inclement weather. Go to the website to learn more and sign up for alerts.

Rideshare and Taxis

Rideshare apps like Uber and Lyft are also great alternatives to the low-cost and free options outlined above. I love a Lyft!

Pedestrians Unite!

Within walking distance, you can visit the Science Center, Aquarium, and Federal Hill Park. Camden Yards is just shy of a half mile away. The area appears to be teeming with culture and fun things to do. Hopefully you will find some fun on foot. Please do set out on foot with friends.

Inappropriate SNL 'Anomalous Man' Debuts Before Face Equality Week May 13 - 19

noreply@blogger.com (KMJ98) — Tue, 07 May 2024 20:24:00 +0000

The fight for representation continues in writer's rooms around the world. May 4th's Saturday Night Live aired a sketch called Anomalous Man, featuring a Elephant man-like fellow falling in love with a beautiful woman. Anomalous man is found out as the player he is when his phone(s) "dings" during this period piece that reveals him texting with other women. Phone addiction and modern (ahem) dating culture would be better served without the need to exploit persons with facial differences. His appearance did not need to be a device for the skit to be a successful one. It was quite unnecessary. Our Executive Director, Erica Klauber, shares more on our feelings about this SNL sketch in this video.

Writers should be able to get their jokes and overall point across without poking fun at a person's physical attributes. Thankfully, CCA Kids joins the Face Equality International's (FEI) efforts to raise awareness about these issues of representation on screen, stage, and more each year during Face Equality Week, May 13 - 19, 2024. "Face Equality International is an alliance of Non-Governmental Organisations (NGOs), charities and support groups which are working at national, regional or international levels to promote the campaign for ‘face equality.'" During the 2024 face equality week, FEI will share with the world that every face is equal because we are all masterpieces. The theme, "my face is a masterpiece" will utilize art as a tool for social good. If our bodies and faces are works of art, then the hope is that our collective humanity is reflected in the entertainment we consume at home and in theaters around the world.

Please take a look at this year's theme on the FEI website, and follow their social media pages. Take a look at the other nonprofits and non-government organizations that will come together to bring their take on the theme to life via social media campaigns.

Link to full video response:

https://youtu.be/HiK6w06aUM0?si=IjZJ0FzkLdbEvE9I

View this post on Instagram

A post shared by Childrens Craniofacial Assoc. (@ccakids)

Teen & Young Adult Online Social, Friday, March 22nd

noreply@blogger.com (KMJ98) — Tue, 05 Mar 2024 00:42:00 +0000

CLICK HERE TO JOIN THE ZOOM On Friday, March 22nd

Check your Time Zone and Login

5-6PM PST

6-7PM MT

7-8PM CST

8-9PM EST

CLICK HERE TO JOIN THE ZOOM ON MARCH 22nd

Camp Cosmos March 2024

noreply@blogger.com (KMJ98) — Mon, 05 Feb 2024 00:51:00 +0000

Join our friends at ConnectMed for their upcoming Camp Cosmos on Saturday, March 16th. The virtual portion of the day is open to any child with a facial difference with access to Zoom and the internet. Times are 9:30-11:00AM PST / 11:30AM - 1:00PM CT / 12:30-2:00PM ET

For residents of the San Diego area, there will be an in-person component at 15529 Sycamore Canyon Rd, Poway, CA 92064 from 12:30PM - 3:00PM PST

Register here

Reframing Self-Care Activities

noreply@blogger.com (KMJ98) — Tue, 30 Jan 2024 16:46:00 +0000

I'm a huge fan of this newsletter that I receive each day in my work inbox called The Good Trade's The Daily Good newsletter. They have mouthwatering recipes, incredible playlist and podcast suggestions, and sustainable goods suggestions that are out of my budget yet out of this world. A girl can dream. Everything feels so elevated and modern, sensible, and sublime when you read the clean black text on the eggshell background, adorned with images of sliced lemons or an uncluttered bedroom.

Since the beginning of the year, they began creating these list of 99 things. 99 words of self affirmation, 99 this and 99 that. In today's newsletter they shared a list of 99 Inexpensive self-care ideas for the new year. I loved the ideas, and many of them are free, like the first suggestion, wash your bedding, towels, robes, and curtains. Once you've re-fitted them in their proper places, breathe deeply. Remind yourself that stagnancy and sadness aren't permanent. We all just need a tumble-dry sometimes." If the task feels overwhelming, break it up across multiple days. Wash and dry the bedding one day, the towels, the next then the robe and the curtains on the third.

The suggestions are not novel, but how they are so thoughtfully framed feels fresh. In reorganizing your closet, do it with the intention of "engaging your creativity in order to enjoy your daily routines more thoroughly." Wow! Focus your attention on the moment, mindfully.

Self care is not all bubble baths and chocolate. It is doing the things we do not want to do, but we know are good for ourselves. For me that bedding suggestion rang so true, as did reorganizing my closet, or moving the furniture around a bit. First thing in the morning, nor the middle of the day, nor evening do I want to do these things. I do not want to do them in a hat, nor with my cat*. However when reframed as a positive for my world and my experience in it...well you've got me.

Try these on and let me know how they feel to you. Also subscribe to the Good Trade's The Daily Good. You will not be disappointed.

*I do not have a cat. It just rhymed nicely.

Register for Camp Cosmos Holidays In Candy Land Virtual Event on Sat. Dec. 9th and In-Person Sun. Dec 10 in San Diego

noreply@blogger.com (KMJ98) — Thu, 30 Nov 2023 19:28:00 +0000

Camp Cosmos is accepting registrations through Sunday, December 3rd.

Register here today!

#GivingTuesday: Fund Intangible Moments That Last A Lifetime

noreply@blogger.com (KMJ98) — Tue, 28 Nov 2023 03:33:00 +0000

Today is #GivingTuesday.

BlackFriday, SmallBusinessSaturday, and CyberMonday are all about getting gifts for others or for ourselves. Over those three days of raucous retailing, we focus so much on having the things -- the tangibles. #GivingTuesday is all about, what my mother calls, the intangibles. Giving for the sake of giving, enriching someone else's life because you can. Enjoying small moments of joy with one another.

For instance, I watched my mother experience an intangible moment with her grandchildren on Thanksgiving. The three of them were playing a game, my creative Mom created, which involved putting everyday objects in old breadcrumb cans, and trying to identify the objects in the can without opening them. There was no cost to this adventure. Just whatever was laying around the house, and a bunch of giggles and guesses. Yes, we were in a warm house, after a big meal, and all of that costs money, but the unbridled joy that all three of them had in those moments together are something that will be remembered for the rest of their lives.

At CCA, we create similar opportunities for individuals and families through our Annual Retreat and Educational Symposium. The Retreat, much like our thanksgiving feast, costs money, but the opportunities for moments, for memories that last a lifetime, are immeasurable. Running around the ballroom with a bunch of new friends that you will grow old with. Tittering in the corner of teen night with new girlfriends about the cute boy across the dance floor. Sharing a meal and an adventure out in the new city CCA descends on every year. These experiences are not quantifiable. Neither are the bonds created that endure across states, countries, and continents. You are never alone again. Never again!

Friends and family frequently ask what I do for CCA, what is it, and why am I so passionate. I have my usual elevator pitch and personal story, but I thought it would far more meaningful to hear from others in the community this time around. Read and really look for those intangibles.

"People should donate to CCA because people from all walks of life come together to find support and camaraderie in having a facial difference."

"Having a facial difference, you live every day in a world where you don't know how people will react to you. Nor how you feel about your appearance. Being a part of CCA, you discover the good to having a facial difference. If you never had the opportunity to experience life with a facial difference, then you wouldn't have had the chance to meet all these amazing people that are a part of CCA."

"CCA is such a blessing for me. Life hasn't always treated me well, but CCA is just so wonderful."

People should donate to CCA because it's a safe haven for so many families affected by facial differences. It provides us with a lifelong, ever-growing family that loves and supports one another through life's successes and challenges, especially those unique to living with a facial difference. Also, it's so important to donate to CCA so the organization can continue to do the important work of educating the world about differences and the importance of acceptance, kindness, and inclusion.

Your donor dollars will last longer than any Apple Watch, or gaming system. Your donations represent hope, promise for a brighter tomorrow, and eradication of the dark clouds overhead. Bright skies and welcoming arms await. Children and individuals will be part of a community that will endure for decades to come. A donation today is an invest in inclusion, friendship, unconditional love, laughter, and a community that is simply second to none. Those are some of the greatest intangibles a human may be so lucky to experience.

CLICK HERE TO DONATE

Reflection: CCA Annual Retreat and Educational Symposium in Minneapolis

noreply@blogger.com (KMJ98) — Thu, 28 Sep 2023 17:58:00 +0000

Editor's Note: Christine Clinton was kind enough to write a reflection on our 2023 Annual Retreat and Educational Symposium. This retreat is so very important to all our families, and adults like Christine, who wait all year for the last weekend in June when the CCA community comes together to relax and spend time with one another. Next year, we will be in Baltimore, MD, from June 28 - 30th, 2024. Keep an eye on our social media channels and website for more details.

By Christine Clinton

This year, the Children’s Craniofacial Association held their 33rd Annual Family Retreat and Educational Symposium in Minneapolis, MN from June 22nd - June 25th, 2023. I had never been to Minneapolis prior to the retreat, so I was very eager, and very excited, to be able to attend another retreat with CCA.

This was my eleventh retreat with CCA, so I was especially happy to be able to attend. Places of interest that I made sure to visit while I was there was the Minneapolis Queen River Boat Cruise, which my friend Bernice and I did on Friday afternoon, and the Basilica of St. Mary Church. I went to the Basilica on Sunday afternoon. We also went to the famed Mall of America too!

Some of the highlights of the retreat that I especially enjoyed was the educational symposiums. Bernice and I attended two of the symposiums, before I even got my retreat bag to see what special goodies CCA had for us. After a day of symposium sessions.Thursday night was the retreat kickoff and entertainment. We had fun watching the magician and enjoying some snacks.

On Friday, we had a welcome breakfast, and then Bernice and I went on the river cruise. After we got back to the hotel from the river cruise, we were able to enjoy the carnival celebration; that was fun, I was able to catch up with my friends from CCA, and meet new families who were there as well. Friday night was family night, with the hometown raffle baskets. It was so fun to see what everyone brought for their raffle baskets. The bag that Bernice and I put together, another friend had won, so that was awesome to see.

On Saturday we had breakfast again, and then there was a talent show, such great talent. After the talent show, we were able to relax a bit, before the dinner/dance. To me, the dinner/dance is a very fun night, but it is also a little sad, because it is the last night we are all together before everyone goes their own way to go home. I enjoyed great food, spending time with lots of my friends, awesome music, taking lots of pictures, and dancing the night away.

Sunday morning, we had our farewell breakfast, took more pictures, and said our goodbyes until next year. I always thoroughly enjoy every retreat with CCA, but for some reason, the retreat in Minneapolis was much more special for me. For me, the weekend of the retreats is the one weekend that I look forward to all year long, and the one weekend that I thoroughly and truly enjoy. I feel normal when I am on these retreats, and I feel like I can be myself. It is a true blessing to be able to be with others who understand the struggles of life.

Thank you to the Children’s Craniofacial Association for all that you do for families and individuals with craniofacial differences

Disability Reads: Ariel Henley's "A Face For Picasso" A Revelation For Those in the Facial Difference Community

noreply@blogger.com (KMJ98) — Thu, 28 Sep 2023 17:31:00 +0000

By Kara Jackman

I waited two years to read this book.

Two.

I avoided reading this book because I knew how close to home it was going to hit – a cannonball to the solar plexus. It was all going to be all too much, so I had to be ready for it.

I was as ready as I would ever be this summer, and I am happy to report I enjoyed every bit of the book, “A Face For Picasso,” written by Ariel Henley.

She spoke directly to the way many of us feel in and out of the hospital. Ariel Henley is a twin. She and her sister, Zan, were born with Crouzon syndrome. Not only did she experience these surgeries, she also had to watch her sister go through them as well. They were part of a large family with three older siblings, and a mother and father that loved and fought for them all along the way.

This exquisitely written book chronicles Ariel’s life in beautiful prose filled with wit, love, and revelations that were very meaningful to me as a fellow craniofacial-affected person. The book is organized into three sections: Before, Finding My Voice, and Healing. She gets into the surgeries, watching her twin experience surgeries, addressing her time in therapy, school, and as a cheerleader. In between, she talks about art history with regard to Pablo Picasso. Her ability to fold in the research she did on Picasso was seamless, and easy to understand. If you are not an art history buff, be assured you will find this approachable. I certainly learned a lot about the man behind the paintings, and I was not impressed, which is why Henley titles the book “A Face For Picasso.” This framing is a way to talk back to his misogyny and the rules of art that govern beauty such as symmetry.

Ariel deftly named so many things that we all experience, but often are not able to explain. Often we chalk it up to trauma, but never explore the root cause of that trauma. Her descriptions of agency and bodily autonomy are truly where the rubber hits the road. She writes, on page 184 of the book:

“When you grow up in a hospital, you learn that bodily autonomy is a myth. My body was not my own. It did not belong to me. It belonged to the doctors and nurses who shaped every part of me. It belonged to the hospital personnel and to my parents, who signed waivers, consenting to strangers touching, breaking, molding, the very essence of who I was. This was what I hated the most about surgery. It wasn’t the idea of my body being cut open or the pain I experienced when I woke up. It wasn’t even the terror I knew I’d experience during recovery. It was the oblivion. It was fading off into total nothingness. It was waking up and realizing I had no idea what had been done to me. I didn’t know who saw me, who helped me, who touched me. I was helpless. I had no control over my own body.”

After reading this paragraph, I gasped, my jaw gaped, and I felt seen. Actually, Ariel saw right through me to my soul. The precipitating event that brought on this bit of introspection by Ariel was trying to figure out where her underwear went after a surgery… it had to be removed for the catheter. Her mother kindly reminded her. This very same thing that had happened to me, and has scarred me to this day. So many of us speak of this experience of having to remove our underwear during surgery and it feeling particularly violating. Only recently, have I been able to reconcile this feeling in my own life.

Another part that stuck out to me was the positive and negative interactions she had with classmates. Usually this kind of book will focus on the negative interactions, but this book shared the special bond she had with friends at school, even allowing them to come visit her while recovering from surgery.

There was some trepidation in allowing her friends to see her recovering, but once it happened, it deepened their connection. After receiving some water and an ice pack a friend brought Ariel after one of these surgeries, she reflects, “I couldn’t show this side of my life to the kids at school. I couldn’t tell them about what my experiences were really like. That was how I knew Nina and Victoria weren’t like our other friends. They never made Zan and I feel like we were different.” This moment, and others like it, detailed in the book, warm my heart.

There is so much in this book to unpack, issues of control over one’s body; all the unpredictability of planning surgeries only to have them fail or not happen at all; school, college, and figuring out one's identity as one’s face and body change from year to year. Then, there are the triumphant episodes that family and friends of Zan and Ariel have around homecoming court and cheerleading which gave me great hope for society. I even appreciated when Ariel chirped back to her parents about things she hated about her life and experiences. Though I don’t believe I could ever do that to my parents, I am sure I did.

“A Face for Picasso” has something for everyone. Please pick it up and read it, or listen to sweet Ariel read the audiobook version (Oh my, yes! She also read her words for the audiobook version.) Again impressed is not a strong enough word to describe Ariel. Explore the many layers that she examines, and feel validated by this book, an authentic and relatable read.

Ariel is currently conducting research for her next book. I look forward to it and anything else she plans on writing. I am a fan for life. And I am forever sorry that it took me so very long to pick up this excellent read. Fear and trauma are such tricksters. Thankfully, I seemingly always have the last word in their defeat.

Participate in ELSA Advocacy Day at Home or in Washington, DC Sept. 18 &19

noreply@blogger.com (KMJ98) — Tue, 12 Sep 2023 16:51:00 +0000

Editor's Note: Our friend Becky Abbott from the National Foundation for Ecotodermal Dysplasias shared this update with us about their upcoming advocacy days on September 18 and 19, 2023 for the Ensuring Lasting Smiles Act (ELSA). You can participate from home or in Washington with NFED, other nonprofits, and friends supporting ELSA. Read more below to find ways you can spread the word and raise awareness about this legislation that "would require all private insurance group and individual health care plans to cover medically necessary services resulting from congenital abnormalities" (NFED.org website). Learn more in this interview with Becky on our youtube channel.

Advocacy Update

We want to share some exciting news! We have made some additions to our Advocacy Resources webpage to help you advocate for the Ensuring Lasting Smiles Act both in-person and virtually!

Updated supporting documents like the ELSA One Pager, Patient Stories and FAQs.
A list of all legislators with links to their social media accounts to make it easier for you to tag your legislators in your social posts and ask them to support ELSA.
Download and print business cards to hand out to your contacts to encourage them to advocate for ELSA. The cards include a QR code that will take them directly to our easy-to-use advocacy web tool. We are currently updating the web tool, and it will be available to use soon!

Advocate With Us From Home

Whether you are joining us in Washington, D.C. on September 18 and 19 or advocating from home, here are some action steps to take for ELSA. Tell everyone you're advocating for ELSA!

MONDAY - Take a picture with the "I'm Advocating for ELSA" sign(either printed or on your computer screen), post to social media, tag your legislators and be sure to use the hashtags #EnsuringLastingSmiles and #NFEDOnTheHill.
TUESDAY - Contact your legislators via the NFED web tool or your organization's tool and ask them to become an Original Cosponsor of ELSA for reintroduction in this Congress. We are currently updating the web tool, and it will be available to use soon!
WEDNESDAY - Share the story of why you are advocating for ELSA with a picture of yourself and/or your loved one(s) who would benefit from ELSA's passage.

ASK YOUR COMMUNITY TO JOIN US!

Share the graphic below on your social media platforms to ask them to join us on Advocacy Day on Capitol Hill from home and support ELSA.

Use these hashtags when you are advocating:#EnsuringLastingSmiles #NFEDOnTheHill

If you are registered for Advocacy Day on Capitol Hill, it is important you attend virtual training on Tuesday, September 12 at 7:30 p.m. CT. You should have received the Zoom link to join the training at the email you used when registering. Please email Becky at becky@nfed.org, if you do not have the Zoom link. Thank you for your continued work for the Ensuring Lasting Smiles Act and those affected by congenital anomalies that would benefit from ELSA!

Check Out Our Day on Capitol Hill T-Shirt

Thank YOU Advocacy Day on Capitol Hill Sponsors!

Organizing and promoting an event like this takes tremendous resources, and we couldn't do it without you. Thank you to Peter and Julie Durand, The Gott-Scott Family, MyFace and Smile Train for sponsoring this fall's event! View All Advocacy Day on the Hill Sponsors.

CAM 2023 Press Release: The Future is Inclusive: How We’re Celebrating Craniofacial Acceptance

noreply@blogger.com (KMJ98) — Sun, 13 Aug 2023 00:47:00 +0000

For Immediate Release
August 9. 2023
Children's Craniofacial Association

CAM 2023: The Future is Inclusive: How We’re Celebrating Craniofacial Acceptance

Children's Craniofacial Association celebrates its 19th Annual Craniofacial Acceptance Month this year and we want to highlight how looking different is a human rights issue. From FaceEqualityInternational.org: “Discrimination and indignities are a daily occurrence for the facial difference community. This is a hidden community that has continued to be marginalized, abused and neglected, throughout history. To this day we do not believe the injustice experienced by this unique community has been adequately recognized or addressed by global society.”

This year our theme is “The Future is Inclusive.” We have asked the world to jump on board the #ChooseKind movement, but we want to be clear: being kind is not enough. We want our world to be inclusive.

Understanding our differences is the first step toward acceptance and building empathy for one another. Many of our kids and adults have shared their stories in schools, churches, and civic groups across the country. This year we hope to broaden these opportunities to meet people on playgrounds, in grocery lines, and even behind computer screens–because advocacy is everywhere! We want to end discrimination and bullying based on visible differences through awareness and adopting the language of other disability advocates. To that end, please help us this month by setting aside a segment on your local radio or television news program for a story about a local child or adult with a facial difference or craniofacial condition. We can help connect you with an advocate near you! If you’ve ever been bullied or teased, you can find an empathetic friend in our community. Together, we can end bullying and discrimination, and teach the world how to truly be inclusive. It is not just enough to be friendly, our families want to be included in local activities, social campaigns, find representation in the media, and be accepted for who they are, not what they look like.

Children's Craniofacial Association, a 501(c)(3) nonprofit organization based in Dallas, Texas and founded in 1989, serves over 20,000 families per year and an additional 5,000 unaffected students in schools across the country. CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look.To request free educational curriculum and additional resources, visithttp://www.ccakids.org.

To learn more about CCA Kids and Craniofacial Acceptance Month, local picnics, and other happenings, go to our CAM website for details.

Disability Reads: "Love, Love" by Victoria Chang

noreply@blogger.com (KMJ98) — Thu, 03 Aug 2023 01:41:00 +0000

By Kara Jackman

I took Victoria Chang’s “Love, Love” on my trip to Annual Retreat in 2022. (Yup, that was last year, and I am just getting around to writing about it this year.) I also brought my Kindle library along with me, too. I don’t know what I was thinking. When would I have time to read? Well, I thought, this was written in verse form, so how long would it take, right? Second, I always like to have a bunch of books around me for comfort when I am away from home. They are like my adult stuffies!

The story is about an Asian-American family told through the perspective of 10-year old Frances Chen. Her sister, Clara, mysteriously begins losing her hair. Her parents focus most of their time on the protagonist's sister, trying to give her vegetables and teas, purchase wigs, and otherwise keep up appearances as Asian Americans living in the midwest United States. This leaves Nancy Drew-loving, and worried, Frances to solve the mystery of why Clara is losing her hair.

Frances has her challenges, too. At school she is bullied, her friend stops spending time with her. She feels very different and very much "the other" in her mostly white elementary school. While times are tough for Frances, she does have one saving grace: tennis. She loves to play, and is quite good. A friend’s coach recognizes her talent, and she begins practicing at the bubble. Soon she must tell her parents about her interest in the game, after being offered an opportunity to play in a local tournament.

While all this is happening, Frances takes lunch in the school library, and begins reading with her friend about hair. They learn all about it, the science of it, what it is made of, and how it grows. At home, she keeps tabs on her sister, Clara, and eventually ventures into her room to learn, discover, and solve the mystery of Clara’s hair loss.

If you don’t want me to spoil the ending of the book, please stop reading here. Frances discovers that Clara has trichotillomania, by reading her diary. Trichotillomania, or hair-pulling falls under the umbrella of obsessive compulsive mental disorders. I, and many like me, some of whom are in our community, struggle with the compulsion to pull our hair. I have had many one-on-one conversations about my lifelong struggle around this issue. I feel this book is a great way to begin some dialogue about it among people in our community.

Frances handles learning about Clara’s trichotillomania in such a beautiful way, without words, but signing letters to her across the table, proving and demonstrating a way Clara can constructively use her body for connection, and to be seen. Frances signs “I K-N-O-W/ Y-O-U/ P-U-L-L O-U-T/ Y-O-U-R/ H-A-I-R.” Clara responds by telling her not to tell her parents. The last page of the book sums everything up nicely. “I still don’t know why Clara/pulls her hair out/I still don’t know/if she will tell my parents/but somehow/I know/it’s not/my secret to/tell/somehow I know that/not even the snow can/bruise us anymore/because somehow/we know/we are each no longer/fully alone.”

In this book, there is so much suffering in silence, and extreme feelings of isolation despite living and being around people. We in the CCA community know how this feels when we are in our home communities, or at school among our so-called peers. Yet, when we are together at Retreat, let’s say, we experience what it feels like to be seen for who we truly are inside, and to know we will never be alone again. This is the message of this beautiful book by poet Victoria Chang. Perhaps, there is no coincidence in me packing this book for retreat last year after all.

Chang grew up in the midwest, too. Though she admits not being very good at tennis, she feels her experiences growing up were similar to Frances. As she writes in her dedication, “To all the bullied kids in the world: I see you. To all the kids who suffer: I see you.” Chang wrote a tremendously beautiful story in verse, about mental illness, family, and belonging. I am so grateful to have read it. I encourage you to do the same.

Many thanks to my colleague at Boston University, Megan Sullivan, for suggesting this book through a syllabus her sister created for a class at University of New Hampshire. You both are truly "my people!"

Picnic Tips for Success This Craniofacial Acceptance Month

noreply@blogger.com (KMJ98) — Thu, 20 Jul 2023 19:17:00 +0000

By Kara Jackman

Editor's Note: I am reposting this piece from 2021 on tips for hosting a CAM picnic. I'm planning my first this year, and really needed to review this article, so I figured why not share it again for everyone. Whether you are first-timer like me or

Believe it or not, as you’re soaking up the summer sun, we are preparing for September! Craniofacial Acceptance Month is just a couple months away. Planning a successful CAM picnic should start now. Here are some suggestions for planning and hosting a top-notch event to raise awareness and celebrate our craniofacial families.

Find A Cool Location & Create Your Guest List

Location location location! As important for a party as looking for a new home, we suggest you find a great space. Consider a local park, beach pavilion, or set up in your own backyard. After a year and some change inside, everyone wants to spread out in the sunshine, so be sure there are plenty of spots for all your guests. It is wise to base the amount of space you will need on the number of people you plan to invite.

State or city parks are great because many are free to use, and provide cool amenities like grills, picnic tables, pavilions, and bathrooms. A playground for the kids is always a crowd pleaser. Be sure to check with your local municipality or recreation department to make a reservation (if that is required and/or allowed), get a permit, and/or pay a reasonable deposit or fee. If it is first come, first serve, you may want a volunteer to go early in the day and stake out the location with some signage and decorations to hold your spot. If possible, include a map and detailed instructions on your invitation, and include a day-of contact number, so people can reach you if they are lost or have something come up.

Invite Your AND Our Friends - Publicizing Your Picnic

CCA is happy to share your picnic location and details with friends in your area. Our database is filled with families you may or may not know. Let us help invite people and publicize your picnic. We are here to help! For instance, if you require RSVPs, you can count on 85-90% of your “Yes” RSVPs to show up. If you do not require RSVPs, it will be harder to estimate a headcount, but the rule of thumb is that roughly only 30-50% of your total invite list will most likely be there on that beautiful day in September.

Pick A Day That Works For All

Some may say the date may be just as important as the location. Choose a day that avoids federal, local, and religious holidays. September is also back-to-school month, so be mindful of fall school events, too.

Food

It can make or break a party! You have a few options here. For years, we had our picnickers bring their own brown bag lunches. It’s the easiest way to make sure everyone’s needs are accommodated, but you have to notify guests to BYOLunch on your invitation.

If you plan to provide food, first, thank you for your generosity! Make sure you have a wide variety of snacks from the savory to the sweet to keep your guests' mouths watering. Variety also allows your guests to decide what works best for their dietary needs and food sensitivities. (Just make sure you ask the location or look for signs that state what their policies are about bringing food to your picnic place! At the very least, you must assume you’re responsible for proper cleanup and disposal of all food and paper products.)

Another option is to have each family bring food in a potluck style. If you go this route, we suggest you create a Facebook event or Google form for your attendees to sign up for things to bring. You don’t want a party with 15 dips, and no chips! Don’t forget to have someone bring disposable cutlery, plates, and napkins!

Finally, many CCA families have had great luck contacting local eateries and supermarkets to see if they are willing to donate food from their stores. Bottled water is a popular donation item and will keep your guests hydrated on hot days. Many local BBQ restaurants are often amenable to this type of donation, and CCA is proud to have our local chain, Spring Creek Barbeque catering our picnic! (CCA can provide our tax exempt letter for charitable donations and sample request letters. Contact us for more information.)
Organize Entertainment & Activities

Entertainment & Activities

Entertainment is vital for a poppin’ party. From music and crafting to sports and games -- pick what works best for your family and friends. Wiffle ball, an acoustic concert, a talent show, cookie decorating, face painters, a DJ, or painting “Kindness Rocks” are fabulous ways to keep your guests engaged.

In past CAM picnics, friends invited special guests to their events. A local celebrity (sports figure, local TV news personality, high school mascot), or local government representative (mayor, councilman, state senator), first responders (firefighters, police, and EMTs) could really give your CAM picnic the draw it needs to make a bigger impact.

Meet The Press

Invite the press using our CAM press release, and don’t be shy! We encourage you to tell your story. Posters filled with pictures and definitions created by your family about craniofacial conditions will showcase your journey. For an added bonus, share how CCA was able to help your family embrace the craniofacial journey.

Info, Flyers, and Posters, Oh My!

CAM picnics intend to promote awareness and acceptance! Make sure your guests leave informed! Contact Annie Reeves for CCA brochures, signage, newsletters, and other printed material that we can mail to you, free of charge. Folks will be able to bring them home to peruse throughout the year and share with their own teachers and librarians. Craniofacial Acceptance Month does not end in September. If you leave an enduring impression with your picnic, these resources will increase compassion and reduce the amount of teasing and questions in the years to come.

You’ve Got This! Document it with Photos

Have a great time! Take as many photos as possible or consider asking a photographer to volunteer their time for the day! After the big event, please email Annie (areeves@ccakids.com) with a short description of the day’s events, exciting special guests, the yummy food you served, and a few (or all) photos you took, so we can publish them in our next E-Network newsletter, and watch our CCA family advocate acceptance in action.

How To Start (And Have) A Conversation

noreply@blogger.com (KMJ98) — Fri, 16 Jun 2023 15:11:00 +0000

Editor's Note: Retreat is right around the corner. We are all going to be among friends, new and old. I collected some advice at the request of one our long time Alums, around conversation starters. This blog post shares how to show up for a conversation and what before and during your chat. The two resources I used for this blog post are adapted from works by the inimitable Dr. Marsha Linehan, the godmother of Dialectical Behavior Therapy, and Today Show online contributor, Sarah Fielding. Enjoy and happy reading. -Kara

How

GIVE Skills (adapted from Dr. Marsha Linehan’s Dialectical Behavior Therapy Skills)

G - Be (Gentle) - be kind, considerate,

I - Interested - Make good eye contact, Focus on Staying in the moment, listening

V- Validate - Validating someone else’s story, experience, or emotions is powerful in creating and deepening connection between people

E - Easy Manner - Smile, be calm, light hearted, A light-hearted attitude can help to ease along a conversation. Try including a sincere compliment or giving a little special attention to the person.

What

What does starting a conversation look like (adapted from Sarah Fielding’s article on the Today show website)

Picture the conversation going positively or imagining you’re speaking to a trusted friend.

Tell yourself positive affirmations such as “I am enough” and “I am great” Do this in the morning before you head down to breakfast or before the next activity
Find common ground, our common ground: (why are you at retreat? Have you anything fun planned to see while we are in Minneapolis?)
Just say it: “I was looking around the room for someone new to talk to and I got the vibe you might be a friendly person to chat with. I’m _____, nice to meet you.”
Consider: What is your intention in speaking to this person? Do you want to greet them, become friendly and create a lasting connection?
Once you have greeted the person, asked a couple of the above questions, scan through this list, take a deep breath and go for more…
What did you think of X symposium session/panel/Retreat event earlier?
How are you doing today?
What brings you to retreat?
Who do you know here?
That’s a nice X you’re wearing.
I love your sense of style. Have you always been someone savvy with fashion or did you develop your style over time?
Your tattoo/jewelry caught my attention. Is there a story behind it?
What’s your most treasured item?\
Have you been to Minneapolis before?
How do you spend your days?
Where did you last travel to?
Where’s next on your list to visit?
Have you read any good books lately?
Have you watched any good shows recently?
Have you listened to any good podcasts lately?
Who never fails to make you laugh?
What books/ movies/ TV shows do you recommend?
Have you ever read X? I’d happily swap with you.
Where did you grow up?
Where would you like to visit?
What made you laugh this week?
If you could be anyone else for a day, who would you choose and why?
What’s something you’ve always been curious to learn more about?
What’s your favorite fun fact?
How did you get into doing X hobby?
What are your goals this week?
Have you ever tried doing X activity?
What’s your favorite thing about yourself?
What’s something about you that surprises people?
Are you a dog or cat person?
Who is the most important person in your life right now?

Retreat 2023: Getting Out & Exploring Minneapolis

noreply@blogger.com (KMJ98) — Sun, 04 Jun 2023 01:30:00 +0000

Your retreat in Minneapolis with all your CCA friends and family is just weeks. Let's get oriented with how to get around the Twin Cities. Once you arrive at Minneapolis St Paul airport, you can choose to take public transportation or an Uber to the hotel, Hyatt Regency Minneapolis. By car, the hotel is 19 mins away, and by public transit it is 30-50 minutes via the Metro Blue Line. Just hop on the Target Field stop and get off at Nicollet Mall. Learn more on the Metro website and purchase at these nearby metro service stations and stores.

Nickelodeon Amusement Park at the Mall of America

Speaking of Malls, the Metro stops at the Mall of America, too! The largest mall in America featuring water parks, amusement parks (the Nickelodeon Park looks pretty cool), and what looks like one of the largest Lego Stores that I have ever seen. You will have to visit to confirm or deny this. I'll be happy to pick up the tab if I am wrong. I love Nickelodeon from the safety of my home, not big on rides, but if you are this looks like the spot for you.

Now, if getting outside is more your style, I would highly recommend the J.D. Rivers' Children's Garden. It's described as a "one acre food and flower garden is nestled into Theodore Wirth Park along Glenwood Ave. It provides ample opportunity to catch frogs along Bassett’s Creek, wade in Wirth Lake, meander through the prairie to search for butterflies, and walk through Wirth woods" The garden is located at 2900 Glenwood Avenue North, Minneapolis, MN 55422. To learn more you can call (612) 499-9248. Looks like its a "Wirth" a shot to me.

A giraffe at the Como Park Zoo

Como Park Zoo Conservatory

Another fun free outing for the family is the Como Park Zoo and Conservatory, which boasts that it is one of the last free zoos in the United States. "Como is home to a wide array of animals and plants." Explore the large conservatory filled with flowers, herbs, shrubs in this beautiful botanical garden. It's nestled right next to the Como Town Amusement Park, Cafesjian historic carousel, and Como Park. The Zoo is located at 1225 Estabrook Dr, St Paul, MN 55103. You can call (651) 487-8201 for more information.There is so much to explore in this spot. I love a botanical garden because I know I can't kill those plants as they are not mine.

Mill City Museum

For a more educational experience head over the Mill City Museum. There you will learn a bit more about the history of the twin cities, Minneapolis and St. Paul. Enjoy the observation deck, experience the flour tower (Minneapolis is the number one city that produces flour in the United States), water lab, and baking lab. This looks like a good time and I heard they give out free pieces of bread, flour capital of the United States and all. P.S. For more recent history, I'm planning to check out the George Floyd Memorial located near Cup Foods, the site of the events of that devastating day, May 25, 2020. The famed mural and other memorial is located at the intersection of 38th and Chicago.

Stone Arch Bridge

Don't miss the sites in Minneapolis. There is more than just the Mall of America, and Target Field (home of the Minnesota Twins). The Stone Arch Bridge and St. Anthony Falls are wonders of modern engineering that you should behold while you visit the city. The Stone Arch Bridge looks like a fun place to walk and take in the city on the water. You will be able to see St. Anthony's Falls from the bridge. The bridge is located at 100 Portland Ave. Minneapolis, MN 55401. Then after walking or biking over the bridge, you can head over to St. Anthony Falls featuring panoramic views of the city, and a visitor center, "that provides information about the falls and its place in Minnesota history. Rangers lead short walks from the visitor center out onto the lock walls and describe how the falls changed the course of history of the area and of the nation." The visitor center is located at 1 Portland Avenue Minneapolis, MN 55401. They are open from 6AM - 10PM daily. No admission is necessary.

Nicolett Mall

If you want to stay closer to home, the Nicolett Mall, just outside our hotel doorstep, looks to be a fun spot to roam and hang with your friends. There are stores, restaurants, and cafes to explore. At one point along Nicolett Mall is the number one attraction I am looking forward to in Minneapolis, the Mary Tyler Moore statue. The groundbreaking Mary Tyler Moore Show, starring the titular character plus legends like Ed Asner, Betty White, Cloris Leachman, among other exceptional comedic actors, was one of the best sitcoms on American television from 1970-1976. A TV addict like myself must make this pilgrimage. I owe it to all my fellow binge watchers, but mostly to my best friend Lauren, to get a photo with the great MTM. The statue is located at 1 Nicolett Mall.

Well, there are additional suggestions on sites to see, places to go, and restaurants to eat at in the links you will find below. Surely, I am looking forward to a great time with all my friends. I hope to be able to get out to see a few things myself.

Minneapolis Visitor Guide

Historical Society's Guide to Attractions

The Crazy Tourist site with Best Things To Do In Minneapolis

On-Site Restaurants 

Open Table Guide To Restaurants Near the Hyatt Hotel
An Article on Fine Dining from Travel and Leisure Magazine

Firebuds Episode Features Animated Kid Car with Cleft

noreply@blogger.com (KMJ98) — Sun, 19 Mar 2023 20:13:00 +0000

Families and friends, grab your remotes and start your engines, the much awaited episode of Disney Channel's "Firebuds"is now available via on-demand. It the last episode of the season, and can be found included on the Disney Channel's on-demand archive or via the Disney Plus app.

**Stop reading now, if you do not want to see any spoilers.**

The 15-minute segment of the two episode show featured Castor, a purple sedan, and his ambulance friend searching for him at the carnival before a surgery to repair his cleft hood. She tracks him down and gets him to the aptly named Dr. Porsche on time for the surgery. She convinces him that he will never miss another carnival after this one and he will be done with surgeries after this is complete. (If only that were true for all of us with craniofacial conditions.) The episode is filled with colorful characters, all of which are cars or other vehicles. The jaunty song wheels on the ground reminds us to stay calm and balanced during life's tough moments like facing surgery or the "dreaded fear of missing out." If we just do the hard things, we can have more of the great things like cotton candy and endless rides and games.

Fun facts about the writer of the episode, Jeremy Shipp, include that his son was born with a cleft lip and inspired this "Firebuds" episode titled, "Cleft Hood." Shipp's son did the voice of the character with the cleft hood. The internet and social media has been abuzz about the episode. It is a great way to raise awareness among young children about facial differences. The episode demonstrates that we are just like all other kids, looking for a fun time at the carnival, and are bummed out by doctors and hospitals.

Watch today and tell us your thoughts about the episode in the comments.

CCA Kids Blog

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CLICK HERE TO JOIN THE ZOOM On Friday, March 22nd

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ASK YOUR COMMUNITY TO JOIN US!

Use these hashtags when you are advocating:#EnsuringLastingSmiles #NFEDOnTheHill

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Retreat 2023: Getting Out & Exploring Minneapolis

Firebuds Episode Features Animated Kid Car with Cleft

Teen and Young Adult Social This Friday MAY 17th at 8PM ET/7PM CT/5PM PT