A = AWARENESS – Small Step Fun

written by Jodee Kulp

First, realize that DOING NOTHING can be healthy. If you need to simply stare out the window for a while and breath that is okay. If you need to cry it is okay. I have ranted at the heavens. You are alive, you made it. The past is behind you. You have this precious moment to simply BE!

Second, it is okay to be naughty sometimes. One week I ate a donut a day for twelve days in a row – but I did not buy another box of them. One week we had popcorn for dinner with lots of butter. And on a really crazy I can not believe all this is happening day – I stopped at Taco Bell ordered a large Mountain Dew and Dorrito Taco Supreme – it had been years. Did it make me feel better – probably not – but it did make me smile each time I dunked that donut.

Third, it is okay to be good to you. I upgraded my shampoo and conditioner. I upgraded my toothpaste. I savored my coffee in the morning. I bought organic vegetables and I ordered Hello Fresh Meal delivery for the past year! Not every week, but most. The convenience of grocery delivery made a huge difference. I bought a new duvet for our comforter. I fell into bed and listened to audio as I fell asleep. Moments of snuggle, cuddle, and comfort became all important.

Fourth, it is right to rally the troops. My husband washes all the dishes and he does not start until I have put all the clean dishes away – we play TAG YOUR IT and it always makes us each smile – instead of face the dreary task of daily dish duty.

And when you are ready – look through this list and see if there is something below that sparks your interest. Remember 1% is more than 0 to create a new you!

FUN IDEASDescriptionSteps to Get Started
PHYSICAL HEALTH
Exercise
Sports		A physical and mental practice that combines postures, breathing exercises, and meditation to improve overall well-being. Or aerobic or intensity exercise that gets your heart rate up.

Try something new!
Take up a new sport!
Or get into watching or volunteering at a new sport.		Choose a space to practice, such as a quiet room or outdoor space.
Purchase or gather necessary equipment, such as a fitness mat or blocks.
Start with simple poses and stretches and work your way up to more advanced ones.
Follow an online video or attend a class for guidance.
Practice regularly, starting with a few minutes and increasing the duration over time.
Focus on deep breathing and meditation for added relaxation
Get Moving
Hiking,
Walking,
Dog walking		A leisurely activity that involves walking on natural paths or trails in scenic outdoor locations or utilize your neighborhood, a local village, or someplace you have been curious.Choose a location to explore or hike in.
Research the trail and prepare for the hike by wearing appropriate clothing and footwear.
Pack necessary supplies, such as water, fun snacks, and a first aid kit.
Start with a shorter hike and work your way up to longer ones.
Take breaks as needed and enjoy the scenery.
Practice safety measures, such as staying on the trail and avoiding hazardous areas.
DancingA fun and energetic activity that involves moving to music and learning new dance styles.Choose a dance style to learn, such as ballroom,  hip hop, tango, salsa, square dance, zumba.
Find a qualified instructor or online resources to help you learn.
Practice basic steps and techniques.
Start with simple routines and work your way up to more complex ones.
Incorporate music and movement to add enjoyment.
Dance with others for added socialization and fun.
CREATIVE EMOTIONAL HEALTH
Studio Arts Painting or drawing or other craft or art style projectArt projects can provide an outlet for individuals to express and explore their emotions, thoughts, and feelings in a creative and non-verbal way.Purchase or gather art, craft, painting or drawing supplies, such as paper, pencils, paint, or brushes.
Find a comfortable and well-lit space to work in.
Choose a subject or inspiration for your art.
Start with simple sketches or drawings to warm up.
Experiment with different techniques and styles.
Practice regularly to improve your skills.
Visual Arts
Photography, video, drama, community TV production		Photography and video can encourage individuals to explore and discover new places, cultures, and experiences, fostering a sense of curiosity and adventure. Photography and video can be a mindful activity that encourages individuals to be present in the moment and observe the world around them.Choose a camera or smartphone with a good camera.
Experiment with different subjects and lighting.
Learn basic photography techniques, such as composition and exposure.
Edit your photos using photo editing software or apps.
Share your photos with others or create a portfolio.
Create a photo book of your favorite shots
Fabric Arts
Knitting, crocheting, weaving, sewing, macrame,
knot tying		There is something very soothing with fabric and yarns that linger on your hands. Fabric arts, can be a calming and meditative activity that can help reduce stress and promote relaxation.Choose a pattern or project to work on.
Gather the necessary supplies, such as yarn and needles or hooks.
Learn the basic knitting or crocheting stitches.
Start with simple projects and work your way up to more complex ones.
Take your time and enjoy the process.
Share your finished projects with others or keep them for yourself.
Music Arts
Playing a musical instrument,
singing, choir, worship,
listening		Playing an instrument allows for self-expression and encourages creativity. It can also improve a person’s ability to improvise and think outside the box. Music can be a relaxing and therapeutic activity that can help reduce stress and anxiety.Choose an instrument to learn.
Find a qualified teacher or online resources to help you learn.
Practice regularly, starting with simple exercises and progressing to more challenging pieces.
Set goals for yourself and track your progress.
Enjoy the process of learning and creating music.
ScrapbookA creative activity that involves organizing and decorating photos and memorabilia in a visually pleasing way.Choose a theme or event to create a scrapbook for, such as a vacation or family gathering.
Gather necessary supplies, such as paper, stickers, and photos.
Plan out the layout and design of the scrapbook.
Start with basic pages and work your way up to more intricate ones.
Add personal touches, such as journaling or mementos.
Share your scrapbook with others or keep it as a personal memory.
Learn New LanguageA cognitive and social activity that involves studying and practicing a foreign language to improve communication skills and cultural awareness.Choose a language to learn, such as Spanish or French.
Find a qualified teacher or online resources to help you learn.
Start with basic vocabulary and phrases.
Practice regularly, starting with a few minutes and increasing the duration over time.
Incorporate listening and speaking exercises for added practice.
Use the language in everyday situations for added immersion.
Visit a restaurant or look up common food from the country and try a recipe or dish.
Take a fun online class
Or watch a movie		Online classes can be taken from anywhere with an internet connection, making it easier for people to fit education into their lives. Pick something easy and just for fun to transport yourself into something newChoose something you want to learn – culinary skills, scarf tying, gardening, sport skills, exercise, laughter, 
Choose a movie venue you are interested in – comedy, adventure, children, romance, animals, something positive
Play Board Games
Or Cards		A fun and social activity that involves playing board games with family, friends, or the virtual community.Choose a board game to play with family or friends.
Read through the rules and familiarize yourself with the game.
Set up the game and gather necessary supplies, such as dice or cards.
Start with simpler games and work your way up to more complex ones.
Enjoy the process of playing and spending time with others.
Practice good sportsmanship and have fun.
VolunteerContributing time and effort to help others and make a positive impact in the community.Choose a cause or organization to volunteer with, such as a local shelter, food bank, church, garden club, HAM radio, medical rallies or runs.
Visit their website, attend a meeting or event/
Research the organization and their volunteer opportunities.
Contact the organization to learn more.
Food
Cooking
or baking		Cooking can be a relaxing and therapeutic activity that helps people relieve stress and improve their mental health.Choose a recipe to try out.
Gather all the necessary ingredients and tools.
Read through the recipe carefully and familiarize yourself with the steps.
Follow the recipe step-by-step, taking your time to ensure accuracy.
Taste and adjust the seasoning as needed.
Enjoy your finished dish or dessert.
Books
Reading or
Audio Books		Reading and listening to books can be a great way to relax and unwind, reducing stress and promoting relaxation.Choose a book or genre that interests you.
Set aside a specific time and place to listen or read.
Make sure you have a comfortable and distraction-free environment to read or listen in.
Read or listen at your own pace and take breaks as needed.
Reflect on the themes and ideas in the book.
Writing,
journal, letters, thank yous		Writing can be a powerful tool for emotional healing and self-reflection, helping people process their emotions and work through difficult experiences.Set aside a specific place to write.
Have a basket with materials ready to use.
Choose a place of comfort.
Choose a writing prompt or topic to write about.
Write without stopping or editing.
Review and edit your writing for clarity and style.
Share your writing with others or keep it for yourself.
GardeningGardening can be a great way to relieve stress and promote relaxation. Spending time outdoors and working with plants can have a calming effect on the mind and body.Choose a location for your garden, such as a plot of land, raised garden beds, hanging planter, simple plant pots, or window sill box.
Research the types of plants you want to grow and purchase seeds or starter plants.
Prepare the soil by removing weeds and adding compost or fertilizer.
Plant the seeds or starter plants according to the instructions.
Water the plants regularly and provide adequate sunlight.
Prune or harvest the plants as needed.
Skills and building with wood, home repair, welding, metal work, automotiveBuilding skills can help people develop their personal strengths and abilities, which can lead to increased confidence, self-esteem, and a sense of accomplishment.Choose something you want to learn that is new or build on a skill you already have.
Visit a store that sells supplies to complete the project
Break the project down into small steps – each step you complete is a win.
OrganizationClutter and disorganization can cause stress and anxiety, while organization and tidiness can create a sense of calm and relaxation.Choose one thing in your home to improve.
Clean a corner, change the sheets, clean a drawer, clean the toilet.
Pick one thing that will help you feel like you tidied up.
2023 Jodee Kulp

A = AWARENESS – Self Care Part 3

Written by Jodee Kulp

Intense Caregiving – My Story

When my daughter’s medical challenges increased; and more of her body systems failed. There was no feeling in her arms or legs and her 3 words were hhh (help), mmm (mom), and iii (ice). Her body’s heart still beat. Her lungs still breathed. FASD became the easy piece. Prenatal alcohol exposure was a set up.

My daughter was only 34 when she faced End Stage Renal Disease with dialysis, stacked on top of Type1 diabetes, Celiac, and a long list of other things that could have been prevented—if only…

Liz Kulp is a strong warrior and she is determined to live. TeamLiz is determined to walk with her. That determination does not come without cost. Her hope for a miracle or a dual organ transplant began.

It is costly to choose life!

My caregiving rose by hours and days, as did her husband’s. Days added up to weeks and then months. Many nights were sleepless and what a 30 year old body could handle a 66 year body could not. I had believed the care partnering system I set up was ENOUGH to keep me safe and healthy. I had cut my client base to four clients and set up strategies for self-care and supportive income. I took fun and supporting classes. I taught fun and supportive classes for other caregivers safely through the pandemic. It was not enough.

For six months TeamLiz weathered intense care requirements in unchartered territory with complex medical and mental health support needs – compounded with misunderstandings of prenatal alcohol exposure by professionals intending to avoid harm. My life and her husband’s life stopped as she regained her personhood – learning to roll over, think, talk, stand, and finally walk.

The process for all of us was life changing and traumatic.

After 30 months, I crashed as I still tried to keep on care giving. My heart beat too fast, my hands trembled, I had lost 25 pounds I did not need to lose, my vision decreased, and as I lay down to sleep the aching pain of anxiety in between my ribs was very real. I no longer knew who I was, my life was so enmeshed in her consuming minute-by-minute needs. My patience had withered and my emotions were heightened. When I was not with her, I was researching for her, care coordinating appointments, fetching supplies. I experienced a part of me that was new and unrecognizable. Five minute breaks became mere minutes, a shower felt like a vacation. Eating breakfast was a blessing. Sleeping without middle of the night crisis awakenings was bliss. I did not have the energy to read or write or think—only to care. Flashing red and blue lights and sirens heightened my response, where I faced crisis strongly.

Yet, this strong warrior woman continued to strive to grow and gain strength and to live. As our daughter regained her life, it was time to discover myself, our family, and most of all my daughter as the incredible human she truly is. And to do that well, I had to be well. I have to learn to really love me.

I needed to discover a plan of recovery that was in one minute increments, afterall, 1% is bigger than 9. In Italics I share my REALITY!

  1. Take breaks: Make sure to take regular breaks throughout the day to rest and recharge. This can include taking a walk outside, reading a book, or doing a hobby you enjoy. LOL – going to the bathroom was a luxury as was brushing my teeth! Any moment could be interupted in crisis.
  2. Get enough sleep: Adequate sleep is important for physical and emotional health. Try to establish a consistent sleep schedule and create a calming bedtime routine. LOL – collapsing onto a pillow was no longer memorable, to change my sheets was a luxury.
  3. Exercise: Physical activity can help reduce stress and improve mood. Even a short walk or stretching can make a difference. LOL – walking up and down stairs, down hospital hallways, and between our homes was aerobics, deep knee bends and floor sitting meditation. As a certified PraiseMoves® instructor I was unable to think, or even take time for a video class.
  4. Ask for help: Don’t hesitate to ask for help from family, friends, or community resources. Consider hiring a respite caregiver to provide temporary relief. LOL – I will be forever grateful to my sisters and friends who joined us to clean and organize and change a home into a care facility, to those who provided cleaning supplies, and paper towels, medical supplies, and all those millions of things we did not know we needed. To those who dropped off soup and Thanksgiving dinner. I do not even remember any of the holidays or birthdays during that time.
  5. Practice self-care: Make time for activities that you enjoy and that help you relax, such as listening to music, meditating, or taking a bath. LOL – books on tape as I hit the pillow, Hello Fresh food delivery allowed me to cook, a quick jump into the shower.
  6. Seek support: Connect with other caregivers or support groups to share experiences, advice, and emotional support. LOL – with the pandemic on in full force and an immune compromised situation, I sought online Bible Study groups one with the elders I so needed and one with business owners in Africa to keep my mind fresh – those two hours a week allowed me to access the world.
  7. Manage stress: Practice stress-management techniques such as deep breathing, visualization, or progressive muscle relaxation. LOL – It was only by abiding in my faith that my sense of calm continued through ambulance sirens, and ICU, and medical trauma and mistakes. All the stress-management techniques in the world, regardless how good, were broken with screams.

Could this intensity have been prevented – we were all fatigued.
The common strategies above I had used previously were not SMALL ENOUGH.

  • I hired a transformation counselor and shared my stuckness at 15 months into this intense caregiving. Little did I know we were barely at the peak of cares we would face in the coming months. The vision board remains posted in my office, it was a start.
  • I journal as I am able – keeping a medical journal for notes to help our daughter, a schedule to do journal which has gaps of 3 months, and a drawing journal. I try to keep these in the same place in my home, carry one to hospitals and appointments, and doodled when my mind was floating and empty. I learned that online notes (Evernote) also can work well when you are on the go and have your smart phone.

How journals benefited me:

  1. Clarified my thoughts and emotions: Writing down my thoughts and feelings helped me process and make sense of the moment, allowed to gain clarity and connect dots to issues I had not seen before.
  2. Reduced my stress and anxiety: Since my life was so fragmented, once it was written down I did not have to worry or think about it. By putting my concerns down on paper, I could reduce the chaotic burden on my mind and leave it on my desk or table, available when I needed it again.
  3. Track our progress: Growth in health was minute, and writing it down allowed us to stay motivated with seeing the success.
  4. Improve self-awareness: Are we dealing with patterns? What are our strengths and weaknesses? Sometimes my note was just one word.
  5. Boost creativity: Allows for my fleeting ideas and thoughts to be documented to help me think outside the box to generate new ideas and solutions to problems.

Journals can be a powerful tool for self-reflection, personal growth, and improved mental health.

I have shared a small part of our story, and I learned to “Love my neighbor” more importantly I needed to also “Love myself” wholy and carefully during such an intense time.

Let’s begin with FUN
– 1% effort is bigger than 0%

In the next blog – I share ideas in small steps to take to help you regain your self-care, I share them from a deeper sense of understanding now. Caring for yourself is just as important as caring for the person with special needs.

Taking steps to prevent fatigue can improve your own well-being and enhance the quality of care you provide. You are THAT IMPORTANT. Spring is coming as Liz and her Team slowly step back out.

A = AWARENESS Self Care – Part 2

Written by Jodee Kulp

The demands of special needs care giving can be unrelenting and can take a toll on the caregiver’s physical and emotional health over time. Therefore, it is important for caregivers to prioritize their own self-care and seek support from others to prevent burnout.

Caregiver burnout is a state of physical, emotional, and mental exhaustion that can occur when an individual is responsible for the ongoing care of a loved one or dependent who has significant health or care needs.

Caregiver burnout can develop gradually over time and can be caused by a range of factors, including the demands of caregiving, lack of support or resources, and the emotional toll of providing care for a loved one. Symptoms of caregiver burnout can include fatigue, depression, anxiety, irritability, social withdrawal, and reduced ability to concentrate or complete tasks.

Below we begin to build awareness of what fatigue symptoms can manifest and affect the quality of your and your family’s life.

Everyone experiences fatigue differently, and that the physical and mental health characteristics associated with fatigue will vary from person to person. If you’re experiencing any of these symptoms, it’s important to speak with your healthcare provider to determine the underlying cause and appropriate treatment.

Print this page out – ponder it – write some notes – look at your results – think about what may be affecting you and your life. Then tomorrow let’s get back together with ideas to make a difference in the quality of your life. It’s important for caregivers to recognize the signs of burnout and to seek support and resources to help manage their caregiving responsibilities and maintain their own well-being.

What mental health characteristics are common with caregiver fatigue?

Mental Health CharacteristicsDescription
Mood changesFatigue can lead to mood swings, irritability, and depression.
AnxietyFatigue can exacerbate feelings of anxiety and increase worry.
Cognitive difficultiesFatigue can cause difficulties with memory, concentration, and decision-making.
Reduced motivationFatigue can lead to reduced motivation and difficulty initiating tasks.
Social withdrawalFatigue can cause individuals to avoid social situations and activities they previously enjoyed.
Sleep disturbancesFatigue can cause disruptions in sleep patterns, such as insomnia or oversleeping.
Lack of enjoymentFatigue can lead to a lack of pleasure or interest in activities that were previously enjoyable.
Decreased self-esteemFatigue can impact an individual’s sense of self-worth and confidence.
Poor stress toleranceFatigue can make it more difficult to cope with stress and can increase feelings of overwhelm.
Increased risk of mental health disordersChronic fatigue can increase an individual’s risk of developing mental health disorders, such as anxiety or depression.
Decreased productivityFatigue can cause difficulty with completing tasks and reduced work productivity.
Brain fogFatigue can lead to a feeling of mental cloudiness, also known as “brain fog.”
Decreased motivation for self-careFatigue can make it more difficult to engage in self-care activities such as exercise, healthy eating, and personal hygiene.
Negative self-talkFatigue can increase negative self-talk and critical self-judgment.
Social isolationFatigue can lead to social withdrawal and feelings of isolation.
Reduced ability to cope with challengesFatigue can decrease an individual’s ability to cope with challenges and setbacks.
Increased use of substancesFatigue can lead to an increased use of substances such as caffeine or alcohol in an attempt to combat fatigue.
Decreased sexual functioningFatigue can lead to a decrease in sexual desire and performance.
2023 Jodee Kulp

What physical symptoms should I watch out for as a caregiver?

Physical Symptoms of FatigueDescription
Low energyFeeling tired, sluggish, or lethargic
HeadachesPain or discomfort in the head
Muscle weaknessDifficulty with physical tasks, feeling weak or fatigued in the muscles
Digestive problemsIssues with digestion such as bloating, nausea, or constipation
InsomniaDifficulty falling or staying asleep
Appetite changesChanges in appetite, either decreased or increased
Decreased immunityIncreased susceptibility to infections or illnesses
DizzinessFeeling lightheaded or unsteady
TremorsInvoluntary shaking or trembling of the body
Vision changesChanges in vision such as blurriness or sensitivity to light
Increased painIncreased discomfort or pain, especially in areas affected by chronic pain conditions
Respiratory problemsDifficulty breathing or shortness of breath
Increased heart rateAn abnormally fast heart rate
Weak immune systemA weakened ability to fight off infections and illnesses
Weight gain or lossChanges in weight, either gain or loss
Skin problemsSkin issues such as dryness, itchiness, or irritation
Chronic painOngoing pain that lasts for an extended period of time
Reduced coordinationDifficulty with fine motor skills or balance
Increased sensitivity to light and soundHeightened sensitivity to light and sound
Gastrointestinal problemsDigestive issues such as bloating, cramps, or acid reflux
Increased thirstA higher than usual need for hydration
Increased or decreased appetiteChanges in appetite, either increased or decreased
Reduced sex driveDecreased libido or sexual desire
Reduced balanceDifficulty with balance or coordination
Changes in body temperatureChanges in body temperature such as feeling excessively hot or cold
Changes in sweatingChanges in sweating patterns, either excessive or reduced
Changes in menstrual cycleChanges in menstrual flow or irregular periods
Dry mouth or throatDryness in the mouth or throat
Increased or decreased urinationChanges in urination patterns, either increased or decreased
Increased susceptibility to illnessHigher likelihood of contracting infections or illnesses
Jodee Kulp 2023

It’s important to note that not everyone with fatigue will experience all of these symptoms, and that some symptoms may be caused by underlying medical conditions. If you’re experiencing any of these symptoms, it’s important to speak with your healthcare provider to determine the underlying cause and appropriate treatment.

Looking for more ways to support children with special needs? Join Red Shoes Rock to help support those affected by prenatal alcohol exposure.

Check out all out BLOG articles – we will begin posting more i C.A.R.E. ideas to help you and your family.

A = AWARENESS Self Care – Part 1

Special Needs Parenting: Managing
Fatigue Through Self-Assessment and Self Care

Written by Tilda Moore

Parents of children with special needs know a level of fatigue beyond tiredness.

Unlike tiredness, fatigue is a sense of exhaustion that can’t be easily relieved through rest. At Red Shoes Rock, we know that parents of children with fetal alcohol spectrum disorders (FASD) often deal with a number of parenting challenges arising from the physical, behavioral, and neurological symptoms of FASD, especially with the presence of co-occurring disorders such as ADHD and sensory processing disorder

One of the most significant challenges facing these parents is managing their own physical and emotional well-being. By assessing your level of parental fatigue and creating a self-care treatment plan, you can boost your energy and become the best possible parent you can be!

Special needs caregiving fatigue, also known as caregiver burnout, is a state of physical, emotional, and mental exhaustion that can occur when someone provides ongoing care and support to a person with special needs. This type of caregiving can be demanding and stressful, as it often involves managing complex medical needs, navigating bureaucracies, and systems, and dealing with behavioral and communication challenges. As a most-often hidden disability it also becomes a point of contention between caregivers and professionals in advocating for the individual with FASD.

Assessing and Diagnosing Parental Fatigue

It’s important to recognize the signs of parental fatigue so you can take steps to combat fatigue before it leads to complete burnout. Beyond feeling exhausted, irritable, and unable to concentrate, fatigue can create physical symptoms such as headaches and muscle tension. Fatigue also tends to trigger symptoms of other mental health disorders, such as anxiety and depression. It can also trigger underlying health issues as your quality of health and stamina decreases.

Self-assessment can be a useful tool for identifying and managing fatigue, but it’s important to seek professional help if you’re experiencing persistent or severe symptoms. A professional might evaluate your fatigue by asking about your sleep quality, associated mental health symptoms, marital satisfaction, and your caregiving burden.

Refocusing on Personal Goals
Being a parent to a child with special needs can become your entire identity. While many parents are happy with this, others crave a sense of individuality and personal fulfillment.

Pursuing your personal passions can help you find a greater purpose.

And this is not selfish!


We Are Brave Together suggests taking time to reflect on your goals and creating a vision board for your life. To carve out space for these personal goals, think carefully about the tasks and relationships that are taking up your time and mental energy. If certain tasks are not vital to your family’s health and well-being, see if you can drop or outsource them. If certain friends or extended family members are dragging you down, consider spending less time on these relationships.

Making a Career Change
If your job is taking a lot of your time and energy or creating excess stress in your life, consider a career change. Spend some time refreshing your resume so you can catch the attention of hiring managers. You can use a free resume builder to design an eye-catching resume featuring a modern design and sections that perfectly highlight the skills and experience you’ll bring to the job. Just pick your favorite template and add your own text!

If you need to be home to care for your child, running a home-based business might be preferable to employment. Set up a comfortable home office and find a work-from-home routine that works for your family. You’ll also need to register your business and choose a business structure. Consider structuring your business as an LLC for ease and flexibility. Plus, you’ll enjoy liability protection and tax advantages! Just be sure to read up on your state LLC rules first.

Avoiding Unwanted Outcomes
As you work to create room for self-care in your life, be prepared to face potential unwanted outcomes. For example, spending time on personal pursuits may mean your partner has to take on more household responsibilities and parenting tasks. This can create conflict in your relationship, so be sure to sit down with your partner and discuss your needs beforehand. Self-care can also create feelings of guilt toward oneself.

To overcome guilt, PsychCentral suggests reframing how you perceive self-care.

PsychCentral

When you take care of yourself and honor your needs,
you’ll create a strong foundation on which your children can grow.

Special needs parenting is a challenging role that requires a significant investment of your time, energy, and resources. It’s important to remember that self-care is not a luxury but a necessity. By assessing and diagnosing your level of parental fatigue, pursuing your professional goals, and understanding negative outcomes, you can take steps to relieve stress and maintain your energy.

Looking for more ways to support children with special needs? Join Red Shoes Rock to help support those affected by prenatal alcohol exposure.

Check out all out BLOG articles – we will begin posting more i C.A.R.E. ideas to help you and your family.

A = AWARENESS – Home Business Tips

Run a Business as a New Parent with These Essential Strategies

Written by Tilda Moore

This article is one of many informative pieces available to read at Redshoesrock.com.

So many families of children with special needs begin home businesses to provide income and allow for supervision and support of their beloved children.

We are happy to offer some ideas and tips.

How do you start a business as a new parent?

While there are many answers to the question, there are a few key universal elements. Practicing self-care to reduce stress, figuring out a schedule that works for both you and the baby, and utilizing all the various tools and resources available to you are three of the most important, but you can also come up with a few strategies for your own and see which ones work best. Sometimes trial and error is the only way to determine which direction you should head in. Here are a few tactics you can try as you work to get your business up off the ground and spend quality time with your baby.

Stay comfortable

Running a business is hard work, and the first year of parenthood–while joyful–is often exhausting. Staying comfortable and finding clothing that makes you feel great about yourself is crucial, so look for soft, stretchy tees, supportive nursing bras, and cute leggings that take you from naptime to running errands.

It’s also a good idea to ensure you have plenty of back support at your desk, during feeding times, and when you’re sleeping. Learn a few stretching exercises you can do from any position, which can take some pressure off your neck and shoulders. Invest in an adjustable, comfortable chair for work, and look for supportive memory foam pillows to help you get solid rest every night.

Use the right tools

Staying comfy can help you reduce stress, but using the right tools for parenting and running your business is also important. There are so many online resources available for small business owners that you can DIY just about anything, including creating a logo for marketing or even your own invoices to ensure your customers pay on time. Billing is made much faster with an invoice maker, and you can choose from several templates that make the process even smoother.

When figuring out a new schedule with the baby, using tools like an app to keep track of feeding times and diaper changes can go a long way, especially during those 5 a.m. wakeups.

Give yourself peace of mind.

The right tools can be majorly beneficial as you get things up and running, but there are other ways to make life a little easier for yourself. Your business structure, for instance, can provide protection for your assets while giving you tax benefits at the end of the year. There are several options to choose from, but one of the most common is a limited liability company, which requires less paperwork than some other structures and gives more flexibility. Every state has its own steps to follow, but you can simplify the process even more–and save some money–by hiring a formation service to file instead of an attorney.

Find a routine that works for you.

As a new entrepreneur and a new parent, you may start comparing yourself to others doing similar things, but finding a routine that works for you and your family is essential. If it’s most comfortable for you to set up a play/sleep area for the baby in your office, go ahead! If you’re a night owl who likes getting things done when everyone else in the house is asleep, do what you must do. Remember to do self-care by not neglecting your body and mind during this time. Ask for help from your partner, friends, or family members when you need it in order to avoid burnout.

Becoming a business owner and a parent at the same time can be overwhelming if you’re unprepared, so think about how you can make both processes as smooth as possible. Plan ahead, stay organized and utilize all the tools at your disposal to enjoy this time as an entrepreneur and a parent.

Need to get in touch with the team at Redshoesrock.com? Reach out today.

Photo via Pexels

C=COMPASSION – Wellbriety

Non-Native recovery approaches often look at addiction as an individual disease, ignoring the social, political, or economic roots of addiction. The indigenous experience adds a dimension of acknowledging sociopolitical causes without removing an individual’s need to do the hard work it takes to heal. This is new, culturally specific thinking that can also add to the field of mainstream recovery knowledge.

– Don Coyhis (founder) and Richard Simonelli

The White Bison Vision

Don Coyhis, Mohican Nation, is the President and Founder of White Bison, Inc., an American Indian non-profit organization, located in Colorado Springs, CO. Don originally set out to raise awareness and treat alcoholism among Indian youth on the reservations. After studying the underlying causes of alcoholism, White Bison’s mission expanded to include drug addiction, dysfunctional families and relationships, as well as the American Indian suicide rate. From this, the Wellbriety Movement was born.

The teachings of Wellbriety go beyond being sober to include thriving in the community and being balanced emotionally, mentally, physical,ly and spiritually. Over the past 26 years, Don has developed a series of culturally-based programs to address recovery and treatment, youth prevention and treatment, programs for healthy families, and healing from unresolved grief and traumatic loss due to intergenerational trauma. These programs are designed to help with all facets of family healing and have been implemented throughout the United States and Canada.

MISSION

White Bison is a Native American-operated 501(c)3 nonprofit dedicated to creating and sustaining a grassroots Wellbriety Movement – providing culturally-based healing to the next seven generations of Indigenous People.

The Wellbriety Movement

To be sober and well. That’s what White Bison wants for our community, that’s why we’re a proud facilitator of the Wellbriety Movement. We must find sobriety and recover from the harmful effects of drugs and alcohol.

To Go Beyond

The “Well” in Wellbriety is the inspiration to go on beyond sobriety and recovery, committing to a life of wellness and healing everyday. Many use White Bison’s healing resource products, attend its learning circles, & volunteer their services to help themselves and others achieve wellness.

A Resource to the Community

White Bison offers sobriety, recovery, addictions prevention, and wellness/Wellbriety learning resources to the Native American/Alaska Native community nationwide. Our resources are also available to non-Native people.

The Wellbriety Movement is an interconnected web spreading across our Native Nations carrying the message of cultural knowledge about recovery.  Substance Abuse Treatment Centers across the country have taken steps to become a Wellbriety Certified Treatment Center. ( https://whitebison.org/treatment-centers/ ) They have met specific criteria by utilizing principles, methods, and resources from the Wellbriety approach within their programs.

By sending clients to Wellbriety Certified Treatment Centers, it means that these centers are guaranteed to:

  1. Include culturally-based Wellbriety curriculum, including:
    1. The Medicine Wheel and 12 Steps course, materials and related counseling
    2. Mending Broken Hearts course, materials and related counseling
    3. Warrior Down/Recovery Coach course, materials and related counseling
    4. ‘The Red Road to Wellbriety: In the Native American Way’ and the supplementary workbook.
  2. Employ at least one individual of Native American ancestry;
  3. Provide individual counseling for clients;
  4. Provide access to a Native American Elder, who conducts ceremonies and provides teachings;
  5. Incorporate traditional Native American healing practices (smudging, pipe ceremony, sweat lodge, etc.);
  6. Establish aftercare plans by providing community referrals for continuous self-care; and,
  7. Ensure all counselors are trained in and incorporate culturally-based curriculum, including:
    1. Medicine Wheel and 12 Steps Programs
    2. Mending Broken Hearts
    3. Warrior Down/Recovery Coach course
    4. ‘The Red Road to Wellbriety: In the Native American Way’ study groups/circles.

C=COMPASSION – Translate!

Translating the world for a person with fetal alcohol

BEING A “COGNITIVE” TRANSLATOR.

Written by Jodee Kulp

Jodee has been a tireless advocate for persons with FASD since 1997, and she continues to pioneer new ways of quality of life improvement. She is the behind-the-scenes engine of Red Shoes Rock and developer of the Expanding Mindz with Canines program to encourage executive functioning growth. She is also the co-producer of Embraced Film (www.embracedmovement.org)

In an abstract world, a brain that thinks concretely may need help with interpretation, and by having a cognitive translator our daughter can avoid mistakes and frustration in professional meetings in finance, social welfare, medical, and the judicial process. When needed she enlists me as her cognitive translator and I attend the appointment or meetings to make sure the communication between the professional and my daughter is understood. Over time both the professionals and individuals gain communication understanding in working as a team.

To translate I make myself “an only when a necessary piece of her conversations”. I may bring a magazine or book to glance through to appear busy or I may catch up on a text message. I make sure to give her the space she needs to manage herself and remain in charge. If she gives me a preset signal, I interject into the conversation for clarification. After the end of the meeting, I ask for a recap of the next steps or meeting. Cognitive translations provide her safety to remain on course and navigate through complicated professional discussions, keep her trust in the professional and increase her skills and knowledge. It also opens the eyes of the professionals to understand how what is said or written can cause huge repercussions.

“You need to keep your blood sugars low” can be interpreted two ways A1c which is a 90-day average or glucose test-by-glucose test. What is low? What does low mean? Does it always need to be low? What about if her body is different from the international average? What if those average numbers are actually dangerous for her? You see one statement can become difficult.

“You need to not lose any more blood.” Do we stop drawing labs?

When she trusts and feels safe she is able to manage more complex situations. With time and experience, she manages her life challenges.

While some professionals consider my attendance a hindrance to her progress I wonder how clearly they understand the brain and metabolic system of a person with fetal alcohol.

For example:

  • In a therapy session for anger management, a therapist described the range of emotions: “Emotions are like waves, there will be low times and high times and if you wait through a low time you can ride the wave up to a high time. Then you will ride the wave back down. Like this.” (Therapist demonstrated with her hand a waving motion.)  I remained silent, watching my daughter process what she heard. When we arrived in the car, I said, “Your therapist had a good idea today about managing anger, tell me about it.” She replied, “I don’t get it, why would she want me to ride in a wagon?”  

Why did this miscommunication occur?

First, we live in Minnesota so she has no experiential frame of reference for a large wave. (Professionals must think about what experience this person has that I can connect new learning to) Second, she took “wa” sound and assumed her auditory processing issues had confused her once again. “You can not ride a wave on a Minnesota lake. If you ride on it, could it be a “wagon?” 

How many times “What we say” is not “What is received?

  • At a job placement meeting, a counselor stated, “I am a realist, do you think senior citizens would like your hair?” “I am a realist, do you think senior citizens would like your clothes?” (And she continued with more questions beginning with “I am a realist”) When we reached the car, my daughter turned to me and said “Why would a Realtor care how I look for grandmas and grandpas. They like me just how I am.” I was glad she had missed the professional’s point.
  • One adult I have translated for begins nodding her head when she “does not” understand. This provides two results – “The person explaining believes understanding has occurred and stops talking.” Another polite adult states, “Thank you so much for telling me that, now I understand.” Only later in the safety of her home do you realize the words understood were hot air.

As a cognitive translator, I do not consider myself an external brain any more than I would consider a seeing-eye dog an external brain for a person who cannot see. I am simply a tool, another set of eyes, ears, and mouth when needed. I become the list maker, the care coordinator, the text message, and the dot connector for individuals and professionals.

When another person I care about was asked in a meeting to provide a two-year timeline of events for judicial. I problem-solve the abstract into concrete finding solutions like notes on recipe cards you can sort into time, phone, and social media texts. Soon, a two-year time frame was created.

The people I love have beautiful brains – they think very differently from mine and all are very capable in so many ways better often than those of us functioning abstractly. In a world that has moved from agricultural to industrial to informational and now to communication, we have left this population behind. She is a strong, dynamic adult with valuable insight into a world that often seems to talk too fast and too much.

Injured with facial stitches and unable to talk well due to an injury, the nurse continued to come into her hospital room pull down her mask and take a deep breath (yes, during Covid). She then proceeded to drop a pill on the floor and put it back into the med cup. Sam, her husband, became her cognitive translator and advocate stopping the situation and requiring new medication. The statement back from the nurse, “Oh, I thought you were retarded.” Enough said.

Cognitive translation empowers versus de-powers.

In a world that is so often dismissive, the professionals often have the wrong thought process, my daughter is a greater person because of her challenges not lesser.

Please share your experiences in missing communication, perhaps together we can start and finish better conversations.

C=COMPASSION Getting Burned

Getting Burned with #FASD

Special thank you to guest blogger R.J. Formanek

— Written and shared by R.J. Formanek – R.J. is one of our beloved FASD Survival Strategy Teachers – R.J. Formanek is the developer and visionary of Red Shoes Rock FASD Aware and the founder of the Facebook Site “Flying with Broken Wings”

Learning how FASD affects each of us individually can make a huge difference in understanding the miscommunication we with this hidden disability often face.

Because of deficits in our cognition, due to the damage (in this case mainly to the frontal lobes) we often do not understand cause and effect, because to us that is an abstract idea. We tend to not be so good with abstract concepts… and that may be due to a lack of understanding.

Humour, jokes are often lost on us because they involve using the ability to look at things in an abstract, as opposed to a concrete light. And many things we say are taken as jokes because the typical person puts an abstract spin on what we say. This can manifest in some interesting ways.

For example… when I was a kid people said,

“Don’t touch fire, you will get burned.”

Burned? I had NO IDEA what that was. I had seen paper and wood burn. Would I burst into flames as well? What did it feel like? What exactly does burn mean anyway? If you have difficulty generalizing you get burned many many times!

And you know what I did?
I stuck my hand in those flames.
And then I knew what burnt was.

Ok, so far, so good…. stay with me here (this is the ‘twist’ part)

People said, “Don’t touch the stove, the element is hot and will burn you.”

Now, I knew what burn meant… and that hurt. BUT… there were no flames, how could this red, glowing element burn me?

And you know what I did?
Yes, you know…. LOL!
I left a fair amount of my skin on THAT one.

People said, “Don’t put your hand in boiling water, it will burn you.”

Now, having been burned once or twice before… I had this one. No problem. EXCEPT: How could water burn me? It wasn’t in flames and it wasn’t red hot like the stove? OK, that’s got to be a ‘joke’ or something…

And you KNOW what I did.
Third-degree burns down most of my chest on that one.

You see, I THOUGHT I understood…  
and in one respect I did. BUT and here’s the big reveal:

I was not able to transfer the knowledge I learned in one situation to another.
I HAD to experience the different types of ‘burn’ to understand.

and so I rolled with the flow of learning one simple word…
… burned in a relationship – well that hurt inside
… sun burned – peeled and blistered
… burn more calories… worked my butt off

and not to forget…
… fire can burn brightly or fiercely – yep really hot
… her eyes burned right through him – felt that one

and I didn’t even add the SLANG usages…
… just think about it – I thought I did

I’m just glad I pretty well had it figured out when I found out that acid can burn as well…. 😉

So, I hope that helps explain some of the problems we often have with understanding what we haven’t experienced, and transferring knowledge from one situation to another similar, yet different situation.

Obvious enough that generalities work to protect the mind from the great outdoors; is it possible that this was in fact their first purpose?  – Howard Nemerov

The way we use the language can be very confusing and when we have a word one can use as a noun, verb, adjective and adverb it will be easy to get burned!

C=COMPASSION – Meltdowns!

8 Reasons for #FASD Meltdowns

Savanna Pietrantonio: “Seeking inside keys to knowledge to prevent abuse from parents, professionals, and caregivers to persons with FASD”

Internal Understanding of FASD Nuclear Reaction Meltdowns

Guest Blog by Savanna Pietrantonio

Savanna is one of our beloved FASD Survival Strategy Teachers

In an effort to reframe my understanding of meltdowns I’ve had to look deeper into the meaningful gifts of the meltdown and change my fear and shame into acceptance that they are always going to be my body’s unique way of communicating with me.

In my attempt to hide my disability, act normally, and bury my feelings I forget that this is not being true to my disability or myself. And my body lets me know.  

Usually through a meltdown of epic nuclear reaction proportions!

I can go about my life for weeks accomplishing, learning, overcoming and shutting off or hiding the FASD part of me.

But I feel everything intensely and emotional and physical distress is a daily part of living with the disability.

I have to learn to respect the meltdown as a symptom of brain damage. I am not being willful, rebellious, purposely destructive, or hateful. My brain is telling me that something is wrong and I need to stop everything and ask for help to both get through daily life and regulate my emotions.I have discovered eight situations, which cause stress hormones to flood my system, and unfortunately, my brain is not equipped to cope with the overload I am asking it to handle. Sometimes I can handle one or more, but as they add together as life often will, there may be no stopping the ensuing meltdown. Find your own keys that trigger our meltdowns. Understand them and then reach out to caring support to walk through your next day safely.

Eight meltdown situations

  • Social situations where I have to “be on” for extended periods
  • A change in a set schedule or a plan I am expecting
  • Fast-paced days where I am thinking and processing constantly
  • Or the opposite days when I am wandering “lost”
  • Anticipation of an event even if it’s a positive one
  • After the event, the letdown and “what’s next?” feeling
  • Something new is being introduced into my life- a skill or an object
  • An expectation that I fear I cannot meet

Neurotypical people can manage inherently as the brain balances their self-regulating neocortex with their limbic emotion regulating system—‘wise mind’ and ‘emotion mind’. My brain because of prenatal alcohol damage can’t do that. Messages between these two parts of the brain get stuck like tangled Christmas lights and I am triggered into an emotional spiral down the slippery slope to meltdown.

To the best of my ability, I can tell you that the warning signs of a meltdown before or after any emotional high or low are there. Both my external brain and I must be on the lookout and aware of them. If the warnings are missed the overload becomes unmanageable. These signs present themselves ahead of the event or days to a week afterward. Compassion and understanding provision us to walk into our complex moments and process them safely.

Find your keys that trigger your meltdowns.
Understand them and then reach out to caring support to help you before they occur.

17 clues of an ensuing meltdown:

  • Restless, interrupted sleep, night terrors (others have vivid dreams)
  • My heart feels like it is racing and an uneasy sense of dread or urgency
  • Boredom (really not knowing what to do next-directionless)
  • Indecisiveness
  • My surroundings become cluttered (suddenly I can’t pick up after myself)
  • The tired but wired feeling
  • Inability to focus on one thing but the impulse to multitask to the extreme
  • Defensiveness and extreme sensitivity
  • Acting withdrawn and feeling alone and isolated or isolating
  • Itchy skin and breakouts
  • Fidgety movements like uncontrolled scratching (others may pick or bite a part of hand or area of the body – bottom lip)
  • Easily frustrated to the extreme (slamming doors or verbal aggression)
  • Obsessions over unrelated things and agitation with them
  • A profound sense of sadness or unexplainable loss
  • The feeling my brain is full and slow, like when you overeat and your stomach feels uncomfortably full
  • Spending money carelessly and in excess

The Pre-crisis—COMPASSION PLEASE!

Before a crisis can occur its critical to stop the spiral by having a compassionate, understanding, non judgmental external brain who has learned not to take your behaviors personally, step in and guide my thinking, give me a perception check or just show care and not let me disconnect. This is not easy as my behaviors are shouting for help while pushing people away at the same time.

I may say something very hurtful when my external brain says, “What can I do to help you?”

“You can die!” I shout because I don’t know what he can do and my brain is no longer connecting to the part of me that can share thinking and feeling.

But there really are things he can do to help me and they really do bring down the energy and place my life back into a state of regulation.

  • Hug me and say I understand. “This is because…” and name it for me
  • Hold me while I cry and listen while I try to get my feelings out.  This may be for more than one day as perserveration is at its most intrusive
  • Help me pick up the scattered brain puzzle pieces and put them into order.
  • My external brain maneuvers my day, stepping in and canceling appointments or doing a task for me so that I can include self-care and put downtime into that moment.
  • Provide direction—one direction only, please.
  • Break down my day or task into single doable steps.
  • Becoming compassionate and nonjudgmental.
  • Or I need to be told to stop all my activity and go rest.

And provide time for me to complete self-care:

  • Sometimes I need a complete escape and to have a fun, new adventure — this builds neuroplasticity.
  • I  focus on the foods that build a healthy brain-walnuts, salmon, and dark chocolate—the magic trifecta for calming. Drink lots of water-mild hydration causes tiredness and fatigue.  And if we’re not talking nutrition- banana bread, carrot cake, mac & cheese, spaghetti. The things that comforted me in childhood.  Baking these things can be surprisingly sensory and calming.
  • Sometimes I need to get to a yoga class to reconnect my mind, body, and spirit or I need an aggressive cardio workout that burns off the adrenaline and cortisol.

I need an intervention so that I can concentrate on the work of really surrendering to my emotions appropriately, processing whatever it was that happened, talking out my feelings and fears, feeling compassion for myself, and coming to a letting go of it. It is exactly like the work of the grief process. If I skip this step, the symptoms become very aggressive and I am propelled into a full fight or flight reaction and I explode with emotion and nothing and nobody is safe from the destruction of self-loathing I feel. This is where I can hurt myself, others and possessions. (Note: some people shut down and freeze.)

Handling a meltdown with love

While my external brain or myself can’t always read my body’s clues, I have learned to meltdown more appropriately as I begin to trust the process.

We have set some guidelines:

  • I can’t run away, especially by driving, but staying in trust and working through the intense situation and he can’t leave me at that moment or I am unsafe.
  • No arguing when glass things are within throwing reach – find a safe open place to work through the issue and I have a sensory or squishy toy in my hands instead.
  • No swearing (this is so hard when I don’t have words).
  • A pact I made with God and myself is that I will not engage in self-harm or use substances. Ever!
  • I am not to strike out in anger at him.
  • I am not to say hurtful, blaming things to him about the past.
  • We have personal space boundaries and if losing it is imminent my external brain cannot—imperatively—cannot react with anger and punishment or aggression and he must not come into my personal space.­­

Sometimes though unfortunately, he has to just hold me down and use extended breathing techniques and calmly stroke my hair and tell me I am loving and loved, all is well and I am safe in a soothing voice over and over again while I kick and scream and cry until I am exhausted and its all gone and I’ve let go of my fear, urgency, and panic.

Triage after the storm

Afterward, the storm really is over and I can be helped into a calm environment where he can prepare a bath (running water is soothing) with dim lighting, zen music, and calming lavender or other essential oil, while I drink a magnesium supplement or I need to be soothed to sleep with weighted blankets and soothing guided meditations playing while he rubs my back or uses tapping on me.

It is possible to get to the place on the other side of the meltdown where you can look at it and see where intervention might have stopped the spiral and what might we do differently for the next time. And reinforce that what my body was telling me is that I need to heed its signals. By understanding and reflecting back I can empower myself when I list these and review them.

The gifts of the cathartic meltdown are the stillness afterward that allows for more clarity   It allows me to see what I need to let go of and what I need to clear space for. It reminds me that I can empower myself by respecting my FASD and that I have to act authentically and within my own trueness not separate from it but within it.

I no longer need to feel shame, as I know God made me exactly how He wanted me to be with unique built-in ways of communicating my needs. I’ve come to embrace and be comfortable in the discomfort knowing that every emotion felt will pass if accepted and felt with compassion.

I can return to the path of “Buddha-nature that is found within suffering and our relationship to it, not by escaping it.” 1 

The taking care of self becomes easier and better the more often you do it and the more your heart and soul become aligned.

After all, the Spectrum
is halfway to SPECTacular.2

Sources:
1 Kiera Van Gelder
2 Koren Zailckas

Red Shoes Rock Lapel Pins

ONLY $5.00 – TO ORDER YOUR PINS VISIT
https://www.etsy.com/listing/1212521642/red-shoes-rock-lapel-pin

Mackie is an amazing young man – now 12 years old – who has Fetal Alcohol Syndrome and Autism and over 150 medical conditions associated with prenatal alcohol exposure. With his Red Shoes Rocking he has been and continues to plan to CHANGE THE WORLD.

This year he has decided to open and run a store called MAC FURRY ROCK RED SHOES to raise money so that children who are hurting can get their own Furry or Stuffie and the Furry the Penguin Cares Book. He buys them at cost to give them away.

Help Mac build this opportunity.

So far, Mac has given 50 C.A.R.E. kits to his children’s hospital and continues to stuff first responders and police cars in his local community. He is also the secret behind presents that arrive at hurting children’s homes who have lost parents to Covid.

Mac has a Fantastic Altruistic Spirit for others. Some call that FAS. Our kids will give away everything they have – that is their gift.

A place for those who love him and care for him to follow his escapades and triumphs and learn about this amazing young man.

http://www.furrythepengion.com

COMING SOON SURPRISE
– Ann Yurcek will be going down the Medical Realities Rabbit Hole in our C.A.R.E. Theme for FASD Awareness starting on June 1 – Watch for our New FREE downloadable AWARENESS Graphic being released NEXT WEEK!

http://www.parentingcomplexchildren.com

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