<![CDATA[A Perfect Day Rocks!

<![CDATA[A Perfect Day Rocks! - Homeslice!]]>Wed, 26 Jun 2024 08:49:35 -0700Weebly<![CDATA["A Perfect Day" WINS!!!!!!!!!!!!!!]]>Wed, 11 May 2016 02:00:01 GMThttps://www.aperfectday.rocks/homeslice/a-perfect-day-wins

Buttons are busting and we are all plumed to announce that our "A Perfect Day" Video, animated by Exceptional Minds Studio,, has won the Vision Award for Animation & Storytelling at the College of Adaptive Arts' Film Festival!

Not only were the films excellent, shedding light on different aspects of living life as a person with special needs, but the film festival was a showcase for the brilliant organizations bettering the lives of young adults with physical and developmental challenges.

Here are four organizations involved in the festival:

www.collegeofadaptivearts.org

http://www.futures-explored.org/

http://creativegrowth.org/studio/our-programs/

www.exceptionalmindsstudio.org

All are amazing programs helping kids with special needs transition into adulthood...turning an inaccessible world into one with opportunity.

The College of Adaptive Arts in San Jose is AMAZING!!!!

Wait...what's that you say? YOU HAVEN'T SEEN THE VIDEO??? Well, just click below:

]]><![CDATA[Thinking the Unthinkable: When Your Child is Facing the End]]>Wed, 06 Apr 2016 04:31:59 GMThttps://www.aperfectday.rocks/homeslice/thinking-the-unthinkable-when-your-child-is-facing-the-endIt's the conversation no parent ever wants to think about; but the most important one they'll ever have.

If your child is facing a terminal illness, you may be so overwhelmed by emotion that you can't even imagine where you might begin. But, like anything else in parenting, it can be handled with love and grace. Please read about how to start the dialog in this incredible article by our good friend Bob Tedeschi:

When a child is dying, the hardest talk is worth having

Paula Skelley at her home in Portsmouth, N.H. When her daughter Lydia Valdez was sick with terminal cancer, Skelley said their open acknowledgement of death served as a way for them to ease each other’s pain.

By Bob Tedeschi @bobtedeschi
January 27, 2016

PORTSMOUTH, N.H. — Lydia Valdez was 8 years old and getting ready for bed one night when she casually asked her mother a question from across the room.

“Mom, do you think if I died now, would God let me see myself as a teenager?”

It was 2012, and Lydia was 15 months into what would be a 25-month battle with cancer.

“I knew a door was opening,” her mother, Paula Skelley, recalled recently from her home here. “And I remember telling myself not to let it shut. No matter how hard that was.”

Conversations about the end of life are hard for most people. But they can be especially sensitive for parents guiding children through terminal illnesses. They often struggle to discuss death because they don’t want to abandon hope; children, too, can be reluctant to broach the subject.

But pediatric specialists say the failure to discuss death — with children who are old enough to understand the concept and who wish to have the conversation — can make it harder for all involved.

A conversation could help children who are brooding silently suffer less as they approach death. It would also ensure parents know more about children’s final wishes.

“It’s not easy, but it really helps,” said Dr. Jennifer Mack, a pediatric oncologist at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center in Boston.

End-of-life conversations are perhaps more accepted than ever before. For the first time, Medicare this year is reimbursing physicians for discussions with patients about their preferences for care at the end of their lives. Living wills, which can be used to specify individuals’ medical wishes if they are incapacitated, have become commonplace.

Paula Skelley displays a photograph of her daughter Lydia Valdez, seen here at age 8.

But the subject of death and how to prepare for it has remained largely off-limits when it comes to terminally ill children.

Pediatric specialists say there are myriad reasons. It’s often hard to predict a child’s response to life-saving therapies and, therefore, the timing or likelihood of a child’s decline. And sometimes children with terminal illnesses, like adults, experience what clinicians refer to as “middle knowledge,” where they vacillate between accepting and denying their possible death, thereby making it hard to know when to start the conversation, said Dr. Anna C. Muriel, a psychiatrist who works with the pediatric oncology team at Dana-Farber/Boston Children’s.

Skelley said she was worried about having a conversation about death with Lydia, but she was more worried about not having it.

“I thought about the vulnerability of being that young, wanting to discuss something so badly, and thinking it’s not OK to talk about unless the adult did,” Skelley said. “It was a flash in my head, like ‘I have to do this.’”

A “love note” that Lydia wrote to her mother six weeks before she died. Skelley said her daughter wrote her many notes in the various journals that she would draw in every day while she was sick.

When Lydia asked whether God would let her see herself as a teenager, Skelley said, “I thought, ‘Now’s my chance. It’s casual. We’ll keep the casual tone.’”

Skelley told her daughter she believed God would grant her wish if she asked. She then asked her daughter if she thought she’d want to be cremated if she died, so her mom could keep her ashes.

“Mom, you wouldn’t want a dead person in your house!” she said, then laughed. After another moment she said, “I think I’d want to be buried at the cemetery by the school. And I want a white coffin. With bling.”
“Once that door was opened, it was easy for Lydia to bring up a question now and then. It was no longer taboo,” Skelley said. “I’d never blame anybody who hasn’t talked to their child about it, but I had no clue how many benefits there’d be.”

Parents often take cues from doctors when considering how to broach medically sensitive topics, but doctors acknowledge they, too, often avoid the subject of death, or they fail to communicate effectively.
“We get anxious walking into the room. We feel sad this is happening,” Mack said. “All these things can get in the way of listening in an open way.”

But Mack and other pediatric oncologists said children are often thinking about the possibility of death long before anyone else broaches the topic. “It’s just that the topic hasn’t been given any air,” she said.

Skelley displays the “memory quilt” made from Lydia’s pajamas and bathrobe.

Palliative-care specialists said that nurses who work the overnight shift are often the first to hear children discuss their own death. Lynne Showers, a nurse for 28 years at the inpatient oncology unit at Boston Children’s Hospital, said it’s no wonder why: “Sometimes to sit in a dark, quiet room and relax without the call lights ringing, without the babies screaming next door. There’s just a calmness about the night shift.”

One child, she said, knew she might die within days but told Showers that neither parent had acknowledged it. “It was like the elephant in the room. When that happens, the child will worry about their parents, like ‘What’ll happen to them when I’m gone, if they won’t even acknowledge that I’m going?’”
Showers spoke to one of the parents separately, and told the parent that the daughter was concerned about how they would hold up after she died. The parents talked with their daughter shortly after, and Showers said the family dynamic shifted noticeably.

“About three hours before she died, she pulled me in and hugged me for like a minute, saying, ‘Thank you for everything you’ve done,’” Showers said. “I’ve thought a lot about that hug.”

Skelley said her daughter found similar relief through their conversations. Her own mother had died a year earlier, making it easier for Skelley to talk with Lydia about how that grieving process worked. “My mother’s death gave her a way to gauge what grief looks like after someone you love dearly dies,” she said.

Left: Skelley displays a drawing that was used to build a memorial sculpture in honor of her daughter. Skelley named the drawing and sculpture “Smiling Through the Brokenness.” The sculpture is part of “Lydia’s Garden,” a space dedicated in her memory, located on a section of the playground of her former school, the Little Harbour School in Portsmouth. Right: Skelley stands beneath the memorial sculpture.

In Lydia’s final days, Skelley said, they were able to speak freely about death, their relationship, their shared pain, and their confidence that they would see each other in heaven.

These conversations helped eliminate any guesswork that might have surrounded Lydia’s preferences for her care. She chose to go home when she knew the hospital had exhausted its treatment options. She told staff members she loved them, and she thanked people for what they had done to help. She died in April 2013.

“After Lydia died, I was not faced with horrendous choices to make while in the depths of despair,” Skelley said. Lydia chose her burial place, her coffin, and the teddy bear she wished to be buried with.
Making these decision empowered her when she was otherwise powerless. And as important as such things were, Skelley said their open acknowledgement of death served more critically as a way for them to ease each other’s pain.

“If we’d never had that very first conversation, she wouldn’t have let me know when the time was near. It would’ve been too big,” she said. “We would’ve been alone in our grief while sitting in the same room, rather than sharing our grief and, in a way, overcoming it together.”

“Instead we could hold each other. And that was a gift.”

Skelley stands at her daughter’s gravesite bench. Lydia specifically requested to be buried in this cemetery to be close to her school.

Bob Tedeschi can be reached at tedeschi@statnews.com
Follow Bob on Twitter @bobtedeschi
Original Link: https://www.statnews.com/2016/01/27/children-terminal-illness-eol/

Do you have a song that celebrates your child's essence? Please share it with us and post it below.

Holding Up Your Spirit,

~Michelle & Dr. Ben

]]><![CDATA[Happy Child Life Specialist Month!!]]>Wed, 02 Mar 2016 17:53:52 GMThttps://www.aperfectday.rocks/homeslice/happy-child-life-specialist-month

March is the month that we celebrate Child Life Specialists. These are professionals in medical settings, primarily children's hospitals, whose job is to minimize the traumatic experience and help children utilize their innate skills of play and learning to decrease discomfort and improve clinical outcomes. To say the least....Child Life Specialists are a blessing and there should be more of them in all medical settings (inside and outside of the hospital) where children with health challenges receive care. The challenge is that Child Life Specialist care cannot directly be "billed for" because there are no specific insurance billing codes dedicated to the important services they provide. So, fewer hospitals that care for kids currently have child life services in place. This needs to change!

Please enjoy the animated music video I created to celebrate the work of Child Life Specialists and share it in an effort to inform more people about the amazing work being done by Child Life Specialists around the world.

Build Play Into Your Own Life whenever possible in order to make challenging situations more tolerable, survivable, and even perhaps enjoyable.

Check out this cover article in Parade Magazine about the group of artists with autism who worked with Dr. Ben & Company to create the animation for the "Perfect Day" video. Exceptional Minds is a superb animation studio doing inspired work....hire them if you have a need for animation!

And finally, I have BIG NEWS to share about my work to improve the lives of families who have children with special health needs. I have accepted the position of Medical Director for California Children's Services in San Francisco. The position begins at the end of March. For all of you striving with me to live better by building a community for families whose kids have health challenges, thank you. For those of you living in San Francisco and the Bay Area...I look forward to seeing you soon. Onward!!!

Happy Child Life Month of March!!!

Dr. Ben

]]><![CDATA[Growing Up With Chronic Illness: Stages and Changes]]>Tue, 09 Feb 2016 04:42:01 GMThttps://www.aperfectday.rocks/homeslice/-growing-up-with-chronic-illness-stages-and-changes

Kids seem to change at lightning speed…sometimes it’s hard to grasp how fast they move from one stage of development to the next. It’s tough to keep up when it's happening to kids without health challenges, so what do you look for if your kid does? Check out these words of supportive wisdom from Awesome Licensed Marriage and Family Therapist Barbara Calvi:

How a child copes with a chronic illness, long term medical care, or repeated hospitalizations depends on their personality, the specific illness, and family support; all play a part in how well a child copes. But there’s another important factor: the child’s developmental stage. Below is a list of the development stages, along with some ways you can help a child with health challenges navigate them more successfully:

Infant/Toddler: This stage is about a child developing his/her overall sense of security and trust. Typically, this happens when the parent is consistently available to meet the child’s physical and emotional needs (diapering when needed, feeding when hungry, soothing and rocking when upset, etc.) But when a child is ill and experiencing physical pain, separation from parents, and restriction of movement, creating trust and security may be more challenging.

To help your child develop that sense of security, be present in the hospital as much as possible, particularly for painful or confusing procedures. Also hold, rock, sooth, and interact with your baby as much as you can. Physical contact with you and the sound of your voice is key; your child is neurologically programmed to look for those things in order to feel safe. And please, don’t beat yourself up if you can’t be there for every single procedure! If you’re there for most of them, your child will still be able to build a solid, trusting relationship with you… and the medical staff who care for them!

Preschoolers: This is when children develop their first sense of independence. This can be a real challenge when your child is confined to a hospital room with a schedule of pokes and pills over which they have no control. The trick here is to allow your child to make as many of their own choices as possible. For example, which medicine do they want to take first? Do they want to sit in your lap or lie on a bed when they take it? What color Band-Aid do they want afterwards? Do they want to watch TV or play a game afterwards? An appropriate amount of control over their situation will help them feel more secure and allow them to build trust with those who care for them.

Caution: No parenting by committee! Avoid ending statements with, “OK” (e.g.: We’re going to draw your blood now, ok?) This makes it sound like they have the option of saying “no” when they don’t. In other words, if the child doesn’t have a choice, don’t offer one! You’ll just get a big “NO”, cause confusion, and potentially make your child feel even more helpless.

Early School-Aged Children: This stage is about mastery over their environment. This can be especially challenging when they are confined by illness. Children at this age have more capacity to understand that they're ill. So, talking about the illness can be empowering. However, they may not get the logic quite right and may believe the illness is their fault (e.g., they told a fib, didn’t share a toy with a sibling, said a bad word, etc.) Assure your child that the illness is not *anyone’s* fault and explain what’s happening to them in an age-appropriate way. There are lots of books to read together to help them understand.   Watch for signs of depression or withdrawal so that you can address their concerns.

Wherever possible (and with your doctor’s ok!), it’s important to allow the child to have some say in treatment management. Be sure to talk to your child’s doctors and nurses beforehand so that you can find empowering ways for them to become actively involved with their care.

Older School Aged Children: This is typically when a child’s world expands beyond their home; school, afterschool activities, and playdates are how most kids learn socialization and boundaries.   But those opportunities can evaporate quickly for chronically ill children. Wherever possible, allow your child the freedom of play. Parents are often understandably apprehensive about letting a child with an illness engage in certain activities with other children and may reflexively feel it’s best to restrict them. But this type of interaction is important to their sense of mastery of their environment and their independence! So, whenever medically possible, allow them to engage in activities with others .

Adolescents:    Ahhh…the Teens. This is when children are knocking on the door of adulthood and developing their own sense of indentity separate from their family. Self-image is everything. Imagine how difficult it is when the illness itself, treatment, or medication has in some way altered (even temporarily) an adolescent’s appearance. It can be devastating for some and there is a risk of depression. Be sure to talk to your child about this; watch for the open doors so that you can start the conversation. (Even if they resist, you’ll send the message that you’re there to listen when they’re ready.) This is also the time when teens are beginning to individuate. Parents can help by stepping back and allowing the teen to manage as much of their illness and treatment as possible. If possible, allow for some controlled rebellion: your teen might go through periods where they slack off on their medication, reject their restrictive diet, or rebel against some other aspect of their health care. As long as the doctor agrees that for short periods of time nothing catastrophic will happen, I suggest parents bite their tongues, sit on their hands and give their teens as much independence as possible!

And finally, remember to get support for yourself as a parent. Find a therapist, a support group, or a spiritual guide to help you. Remember that it is absolutely ok to do occasional things that bring you joy and you do NOT have to feel guilty that you’re experiencing happiness when your child is sick. Find your form of stress relief so that you can be present and grounded for your child…whatever challenges you face.

Remember: no one gets a manual, and improvisation is encouraged!

To your mental health,

Barbara Calvi, MS, LMFT

]]><![CDATA[IT'S HERE!!!!!!!!! THE NEW "A PERFECT DAY" VIDEO!!!!!]]>Fri, 01 Jan 2016 21:50:14 GMThttps://www.aperfectday.rocks/homeslice/its-here-the-new-a-perfect-day-videoin·spired
inˈspī(ə)rd/
adjective: inspired
1.of extraordinary quality, as if arising from some external creative impulse.

We are starting out 2016 INSPIRED...and we can’t WAIT to share our inspiration with you!!!

We promised you a music video in November...but it took just a few more precious weeks to make it right because this is a labor of love by a village of people who are striving to make the world a more amazing place!

This project is what you get when you take a
Pediatrician/Children’s Music Composer, an animation studio and vocational center for young adults with autism (animators who understand what it means to be a kid with special needs), and a compassionate family foundation. All of these amazing beings came together because they wanted to improve the world for children facing health challenges and they knew how much a video like this could be a catalyst for good health and well-being!

This work is meant be a tool for Child Life Specialists; the unsung heroes making it better for children in hospitals and clinics across the nation every day. They cannot officially bill for their services and so have a challenging time showing how they improve the budgetary “bottom line”. That means many hospitals are understaffed (or have no CL Specialists at all.)

But these blessed professionals help prepare kids for the procedures they must endure and are often why children in hospitals don’t come away with PTSD. They teach skills for coping with challenging situations, improve the well-being of the hospitalized child, improve the rate of successfully completed procedures, decrease the need for anesthesia during procedures, improve the family’s perception of care in the hospital, and often improve the working environment for doctors and nurses. And let’s face it: happier people heal faster .

Besides, this music is fun!!

So, cheers to you, Child Life Specialists (as well as pediatric nurses, child therapists, elementary school teachers, parents, and ANYONE working with kids!) PLEASE use this video to help teach guided imagery, self hypnosis, and cognitive-behavioral therapy techniques. It’s designed to be your conversation-starter: “Remember that little girl in the music video who was upset in the hospital but then used her imagination to help herself? Do you want to learn how to do that too?” The emotional aspect of our patients’ care is just as important as the physical!

Here is my 2016 wish: I hope that the animation inspires you to want to hire Exceptional Minds (a 501c3 charitable non-profit) and that you will be amazed at the capacity of a community of individuals with autism to be creative and do professional-level work. I hope it inspires you to purchase and use the music of Dr. Ben & Company in your own uplifting child-focused projects. And I hope, with all my heart, that it inspires you to reach for your best selves in 2016!

Got a Child Life Specialist story? Tell us how this magical person improved the life of a child or family you know….and please share your story here!

Happy Year Ahead…we are wishing you true feelings of gratitude to help you pull through whatever challenges you face.

~Dr. Ben

Ladies and gentlemen, here it is: The very newest video for “A Perfect Day”! Enjoy! Please let us know what you think!!!

]]><![CDATA[Gratitude: It's Good for You!]]>Wed, 18 Nov 2015 00:03:48 GMThttps://www.aperfectday.rocks/homeslice/gratitude-its-good-for-you

Gratitude: It's Good for You!

The leaves are turning, the days are shortening and summer's finally released its fiery grip on Southern California. It's officially time for the Season of Thanks.

It's always wonderful to remind ourselves of all of the good that surrounds us (and maybe take some time to do some good for others), but did you know that gratitude is actually good for you? It's true!! Check out this study:

http://greatergood.berkeley.edu/expandinggratitude

Stress busting? Immune boosting?

What's not to love?

I adore this practice. I try to thank the people I come in contact with every day, including my own family. I try to make sure that I make it as specific as possible so that the other person knows it's really coming from my heart. Their reactions never cease to amaze me; it's like getting chocolate ice cream!

Here’s Dr. Ben’s:

1. Watch this video: http://www.ted.com/talks/louie_schwartzberg_nature_beauty_gratitude#t-203955

2. I wake up and practice a "thank you" run that I learned when working as a pediatrician on the Navajo Reservation in Gallup, NM. The word "Hajonjo" roughly means "there is beauty". So, as I start my morning run to the east and the sunrise, I say to myself, "Thank you to the east and the sunrise, to new beginnings, to the ability to breathe the air and be mobile....Hajonjo.” Then I turn to the north as part of my run and say to myself, "Thank you to the north, to cool weather, to potential and all future possibility...Hajonjo.” At some point during my run, I turn to the west and say, "Thank you to the west, to family, society, language, and being part of something larger than myself, all things that make life more predictable like the waves of the ocean....Hajonjo.” Finally, I turn to the south and say, "Thank you to the south, to the sun traveling across the sky delivering light to the plants that in turn give us energy and oxygen, to all that we have not yet learned, that we may never know, to the unexpected surprises that make life challenging and a mystery....Hajonjo." I end the run with a slow full circle turn to say "There is beauty above me, below me, to the right of me, to the left of me, in all directions and within me....Hajonjo....please help me to walk in beauty....please help us all to walk in beauty."

Isn’t that lovely?

What's yours? Do you have a gratitude song list? Please tell us in the comments below!

And finally, this: we thank YOU, every day, for joining us on this journey. You fill our hearts and keep us motivated to help those struggling with health issues. You're why we're here, and you make every day worth being grateful for.

Big Love,

~Michelle and Dr. Ben

P.S.

My favorite thank you song!

]]><![CDATA[Here Comes Halloween!!!!]]>Tue, 20 Oct 2015 01:45:52 GMThttps://www.aperfectday.rocks/homeslice/here-comes-halloween

Designed and photographed by Tess Allen

Learn how to play inside and there's no storm you can’t weather.

~Dr. Ben

Can you believe it? I hope you’re somewhere that feels the nip in the air, sees the leaves turning, and has you sipping something warm and tasty!

We here in Southern California, however, are still stewing in our own juices. It’s like summer just won’t let go! Temperatures keep hovering in the low 90’s…and let me tell you, it takes some serious imagining to get into the spirit of the season when it’s frying hot outside!

But imagination is just the place you want to be if your child’s facing health challenges and has to be in the hospital (or stay at home) as the season of tricks and treats approaches.
So what’s a self-respecting little goblin to do? Why, bring the party inside, of course!

Here are a few suggestions to get you in the Halloween mood!

A Harry Potter Potions Exam: True gross out! Put things in containers, then place them in paper bags so that you can’t see what’s in them. Players dip their hands inside (ew!) and have to identify what “potions ingredients” they’re touching. Some examples:

-Poppy seeds = beetle eyes
-Cooked penne or fusilli with red food coloring = flesh-eating slugs
-Pearl onions = blind cat’s eyes
-Grass in water = gillyweed
-Smoked oysters = hippogriff gizzards
-Prunes=dried bat hearts

Have the list nearby so they can check off items as they identify them. If your child can tolerate it, have a liter of sleeping draught (grape juice) and a liter of pumpkin juice (orange soda) on hand to toast whoever gets the most right!

(Not So) Fright Night at the Movies: There are loads of fun Halloween movies that are fun and spirited (without being too gory or scary):

-It’s The Great Pumpkin, Charlie Brown!
-The first three in the Harry Potter series
-Nightmare Before Christmas
-Beetlejuice
-Monsters, Inc.
-The Adventures of Ichabod and Mr. Toad
-Ghostbusters
-The Addams Family
-Hocus Pocus
-Gremlins
-Wallace & Gromit: Curse of the Were-Rabbit
-Paranorman
-Frankenweenie
-Don’t Look Under the Bed

Miniature Pumpkin Carving/Decorating: Using smaller pumpkins that can fit on a bed tray, you can help your child scoop out the seeds (or bring them in pre-scooped.) Then let the carving fun begin! If you don’t want to use sharp objects, consider decorating the pumpkin instead:

Dressing Up!! Can’t do a full costume? How about face-painting? Add crazy wigs, costume jewelry, silly glasses, and FOR HEAVEN’S SAKE, DON’T FORGET A FEATHER BOA! (Just sayin’.) Take a look at these gems:

And of course, you must have music to pull it all together! Here’s a classic to get you started:

Have a Halloween playlist? We'd love to see it! Post it here!

Happy Haunting,

~Michelle

]]><![CDATA[Wall O Memories!!!]]>Thu, 17 Sep 2015 01:20:47 GMThttps://www.aperfectday.rocks/homeslice/wall-o-memories

We here at www.aperfect.rocks are SUPER excited to have a guest post this month! Let me introduce you to the lovely Nicte Mack, who rocks special needs parenting with not one but *two* kids with challenges (which you immediately forget as soon as you meet them…because they are 67 flavors of AWESOME.)

When she posted her Wall of Memories on Facebook, I knew I had to tell you about it! Read on!

Dear Families,

We are the Mack Family: Marcos, Nicte, Diana and Lourdes, and we live with some very extraordinary circumstances. The day my oldest daughter Diana born, our world was turned upside down: something was very wrong but the only thing doctors could tell us was that she had “developmental delays”.   For years we knew there was more, but it wasn’t until she was thirteen that she was finally diagnosed with Cohen Syndrome; a rare genetic condition that affects only about 1000 people worldwide. For Diana, it means she’s got an intellectual disability, neutropenia (a weak immune system), retinitis pigmentosa (a progressive degeneration of the retina eventually causing partial or total blindness), hypotonia (low muscle tone), skeletal system issues, speech delay, and autistic-like behavior. In spite of all that, she’s got a beautifully cheerful disposition, a natural curiosity about science, and humble attitude. When Diana was not quite four, I found out we were expecting again. We were overjoyed, until an ultra sound showed spina bifida (a condition where the spine does not form properly) and hydrocephaly (water on the brain.)   In Lourdes’ case, it means she doesn’t have bowel or bladder control, sensation is impaired from the waist down, she uses a wheelchair most of the time, and has endured 9 surgeries. And many times she has literally faced death when the shunt that controls her hydrocephaly has become blocked.

All this sounds very dramatic (and it can be!), but it also makes us realize how lucky we are when we’re not stuck behind hospital walls fretting over an emergency. In spite of all of their challenges (and sometimes because of them), both girls have blossomed into amazing young women: Diana loves her science and nature studies and Lourdes has become a wheelchair athlete, actor, and even won the title of “Little Miss Wheelchair”! They’ve already accomplished so much in their short lives. We also realize that their health can sometimes be fragile, so when they’re feeling good, we go out explore! It’s our way celebrating and being thankful for the healthy times.

The Wall of Memories

Some years ago, Diana had a teacher who had them bring a Weekend Journal in every Monday. It included whatever they’d collected over the previous week. The kids could bring in flyers, pictures, menus or anything else that could tell their story, and Diana loved it! She was able to retell her weekend by making connections with the items she’d found. She enjoyed this so much and was so vitalized by it that we decided to display it on a wall instead of keeping it in a book. From there, it grew into a family affair; a place where all of us could add adventures and review great trips every time we needed a boost. It’s also been great for Lourdes, who has memory loss issues. Once she realized she could reconnect with happy times by using it, she was very motivated to add her own memories. We start a new one every year!

Building Our Wall

Every January, we look for events and plan trips. We like to be explorers! Also, Lourdes is a wheelchair athlete, so every time she goes to an event we find out what’s nearby and start discovering. Diana is all about museums, forests, and nature. I love historic places and my husband likes novelties, so we take turns when choosing adventures.   Then, we try to find great deals and pack food (because hey, let’s face it, travel is not cheap!) That way, we don’t break the bank.

A Little Extra Planning

It’s great fun making sure everyone is involved in the planning, but deciding on your destination is only one part of the process. The reality is that it’s different traveling with a person who has a disability and while it’s a challenge to go out with a wheelchair on your right and a walking cane on your left, it’s not impossible. You know your child, so make sure you plan things out as much as you can. Call ahead, ask questions and make sure you have a check list with you so you don’t stress over forgetting something vital. It will lower your aggravation factor and leave more time for fun! And finally: if it’s possible to travel with help, great. BUT…don’t let that stop you from getting out there on your own! I’ve done it many times!   I just take extra precautions: I travel in daylight, have lots of supplies in my car, AAA emergency insurance, a fix-a-flat system, and a jumper cable. And, I know some basic car repair stuff (which we should all know!) The longest trip on my own with the girls lasted 10 days, all the way north to Chico, CA, then down to San Francisco and through Napa Valley.   I wouldn’t have missed it for the world!

Here are some of the places we’ve been this year:

San Francisco
Muir Woods
Sausalito
Napa Valley
Calistoga (Petrified Forest and Old Faithful Geyser)
Rose Parade
Hearst Castle
Solvang
Cambria
Ragged Point
San Diego (Old Town, Sea World, San Diego Zafari)
Wrightwood (Mountain High Ski Resort)
Disneyland
Big Bear
Lake Arrowhead
Camp Paivika, at Crestline, CA
The Painted Turtle Camp, at Lake Hughes
Camp Got Friends, Redondo Beach
Ability First Wheelchair Sports Camp
Chico, CA
Manteca, CA
Oakland, CA
Huntington Beach
Santa Monica Beach
Venice Beach
San Juan Capistrano Mission
Lancaster Air Show
Medieval Times Show
Tribute to Kiss concert
Challenge Air for Kids (aircraft flight experience)
California Science Center
Shane’s Inspiration Gala
Challenged Athletes Foundation Gala honoring Robin Williams
Infinite Flow Showcase
Life Rolls On Adaptive Surf and Skate
Star Wars Convention
Festival of Tall Ships in Marina del Rey
Air Show in Lancaster, CA

Bringing It All Home

Once you get your mementos onto your Wall of Memories, you’ll be amazed at how they lift you up when the tough stuff happens. It can transport you as a family (or you on your own) back to those great times. And it’s a great reminder to start planning the next adventure!

Believe me, those memories can be a powerful motivator to keep planning ahead when health challenges arise.

Life is short, health is never guaranteed and this world has so much to offer. Your next adventure is waiting for you, so get out there and explore!

Beautiful Sisters: Lourdes & Diana

Love,

Nicte Mack

**************

Didn’t I tell you she was amazing?

And look! The perfect music to listen to while you’re building your Wall!

]]><![CDATA[ A Wheel-y Fun Beach Day!!! ]]>Thu, 20 Aug 2015 00:54:30 GMThttps://www.aperfectday.rocks/homeslice/-a-wheel-y-fun-beach-day

As the season draws to a close, it seems we all feel the urgency to pack those last few summer experiences in before we settle back into fall’s groove of shuttling, lunch-packing and homework-monitoring.

So, it’s off to the beach to feel the surf and get your toes in the sand before the onslaught of pumpkin-spiced…well…everything.

But…if you’ve got a wheelchair user in the family, the idea of hitting the shoreline may seem daunting. (And as anyone who’s ever done it will attest, pushing a wheelchair over sand rates on the fun scale just a notch above a root canal.)

Thankfully, the internet has made it easy to find beaches and parks that are accessible:

http://www.mass.gov/eea/agencies/dcr/massparks/accessibility/accessible-beaches.html

http://www.visitwales.com/explore/accessible-wales/wheelchair-access-beaches

http://beachfrontonly.com/ada-compliant-and-wheelchair-accessible-vacation-rentals/

http://www.frommers.com/trip-ideas/beach-water-sports/the-able-traveler-accessible-beaches-for-everyone

http://www.coastal.ca.gov/access/beach-wheelchairs.html

http://wheelingcalscoast.org/

Many beaches will have sand chairs that you can rent (you just have to leave your ID, so make sure you come prepared.) If they don’t have one where you’re going, you can rent one:

http://www.beachwheelchair.com/rentals.htm

And look! A fun Summer Sand Pudding!

http://www.food.com/recipe/sand-pudding-recipe-516491

And here’s a tune to help you wave good-bye to summer:

So as summer’s last fading light caresses your cheek and her soft breezes ruffle your hair, may you hold fast these memories to keep you warm the rest of the year!

Big Love,

~Michelle

P.S.

It’s too hot.

]]><![CDATA[July 01st, 2015]]>Wed, 01 Jul 2015 20:17:22 GMThttps://www.aperfectday.rocks/homeslice/july-01st-2015

Summer’s in full swing! The heat’s on, Fourth of July barbeques beckon, and the waves are just right for splashing and playing!

Unless…you’re stuck inside.

Summer can be one of the toughest months for kids living with long-term hospitalization or who have to stay indoors for health reasons. It can feel isolating when everyone’s outside…and you’re not.

But since mental health is just as important to recovery as physical health, we’re going to show you how to lift your child’s spirits and chase away the blues by turning Beach Day outside-in!!!

Here are some ideas:

1)    SAND!!!! What’s more beach-y than sand, right?? Get a dish pan (or a cardboard box lined with a trashcan bag), fill it with sand and toys and GET BUSY!!!   You can even go wild and used colored play sand: http://www.amazon.com/Xtreme-Sand-Pound-Box-Classic/dp/B001QJRH5A/ref=sr_1_3?ie=UTF8&qid=1435610743&sr=8-3&keywords=colored+play+sand

Or, if you’re feeling crafty, make your own! http://www.wikihow.com/Color-Sand

Add water so you can make a sand castle!

2)    WATER!!! If you’re able to get outside, this is the perfect opportunity to use water guns and water balloons! (If you’re at a hospital, please check with the nursing staff first!)   If not, get out your dish pan or lined-cardboard box and fill ‘er up! Add toys for splash-y fun. You can also line the bottom of the container with fish gravel and hide small toys or jewels for a deep-sea treasure hunt!

3)    GAMES!!! Beach Ball Volleyball! It’s always fun to bat one of these around! And how about Beach Blanket Bingo? Spread out your beach towels and start calling!

You can make your own cards and use shells, stones or toy jewels to mark your spaces!

4)    MUSIC!!!! Time to bust out your favorite beach tunes!

Here’s Dr. Ben’s (When you just have to break out your own PERFECT paradise):

https://www.youtube.com/watch?v=oI9J1htSS2s

Here’s mine (I’m keeping it old school, yo…) https://www.youtube.com/watch?v=wvUQcnfwUUM

And a bonus tune! https://www.youtube.com/watch?v=imEefjrmRN8

What’s yours? Tell us in the comments below!

5)    Memories and Planning Ahead: Decorate your space with photos, shells, rocks, driftwood and other beach-y items. Have everyone write down their favorite beach memories and put them into an Ocean Jar (a little sand, a few shells and stones, etc.) And now the most important part: plan ahead! Review the memories of where you’ve been and talk about where you’d like to go. Find pictures and information on the new beaches you’d like to see (or old ones you’d like to revisit) and start your Surf Spot. Decorate a shoe box or plastic container; you can also use a scrapbook!   Then, go there anytime you like; you don’t have to visit a place in person to enjoy it!

And check out Dr. Ben’s fun idea: Create your own FIND THE HIDDEN OBJECTS container!

Collect small objects (that can fit in a jar or capped clear plastic container) from adventures over the summer, then make a list of them. Place the objects in a container and fill it with sand, small beads or fish gravel. Then shake and search for the hidden treasures! Have other people check off the items as they discover them. It’s a totally fun activity…and great way to re-live memories of your summer adventures!

Wishing you sunny summer memories and aloha,

~Michelle

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Dressing Up!! Can’t do a full costume? How about face-painting? Add crazy wigs, costume jewelry, silly glasses, and FOR HEAVEN’S SAKE, DON’T FORGET A FEATHER BOA! (Just sayin’.) Take a look at these gems:

And of course, you must have music to pull it all together! Here’s a classic to get you started:

Have a Halloween playlist? We'd love to see it! Post it here!Happy Haunting,~Michelle

Have a Halloween playlist? We'd love to see it! Post it here!

Happy Haunting,

~Michelle