Tag: special needs awareness

Alive East Bay Magazine

Caring Awareness

Stefanie Boggs-Johnson
I write monthly articles for Alive East Bay Magazine. My goal is to provide positive information, resources and hope for all communities. I hope you enjoy March’s edition. đź’š

The month of March always has me in deep reflection. As an awareness month to educate the public about Cerebral Palsy and all that this medical diagnosis signifies, I think about all that my 11-year-old daughter has survived. I think about what emotional turmoil my family and I have survived and about the many families with a special needs diagnosis.

While caring and awareness may be brief for some, the many “hats” that I must wear are the forever symbols of the delicate care I must incorporate, as life is now filled with priorities much different than those of mainstream society. It is a rocky path strewn with emotional, physical, financial, and medical challenges, but these bumps in the road can be faced with help from caring organizations like CARE Parent Network.

Founded over 30 years ago after the implementation of The Lanterman Act (laws to protect and grant equal rights for those with disabilities), CARE Parent Network is a family resource center that provides support for the disabled and the loved ones that care for them.

When my daughter was first diagnosed with Cerebral Palsy, a medical condition due to injury of the Cerebral Cortex (the part of the brain that controls muscle movement and function), I thought her world had been shattered into pieces, resulting in many future hardships. Families feel lost after being told by a medical professional that their child has a condition that will limit their physical or developmental ability. They can feel alone with their fears as they navigate medical terminologies, paperwork, and life-long commitments to readjusting their daily schedules—let alone the educational options and legal rights of which one must be knowledgeable in order to wear a respectful but firm hat of advocacy. While a parent cares for the child, CARE Parent Network takes care of the family unit, providing a network of supportive and informative options.

Whether through support groups or one-on-one support, CARE Parent Network’s  staff are not only knowledgeable but empathetic, as they are, themselves, special needs parents, like program director Hannah Michaelsen. With a degree in public administration and the parent of a son was with Autism, Hannah was a volunteer for CARE for 14 years before becoming its program director. The most gratifying part of her job, she states, “is to share in a chapter where others are more empowered and confident because of CARE’s existence; to equip the parents to advocate and navigate not only the system, but their daily lives.” Through CARE, doors are opened to compassionate directions of understanding. They help clients navigate the intricate paperwork of IEPs (educational planning and goals) and legal rights, as well as addressing personal concerns and frustrations.  

May the months that introduce awareness also introduce connections that inspire compassion and a purpose to create a sustainable and capable community; one where a disability turns into visibility beyond the fog that can overwhelm us.

The ribbon we wear this month is about being aware that there are people who do care. It is a ribbon worn not just once a year but every day. May CARE Parent Network continue to weave together all ribbons and teach families to wear them with not just pride but unwavering hope.  

For more information, please visit careparentnetwork.org or visit their Facebook group page: Care Parent Network

Alive East Bay Magazine

Goalbusters

Stefanie Boggs-Johnson

I write monthly articles for Alive East Bay Magazine. My goal is to provide positive information, resources and hope for special needs awareness and inclusion. I hope you enjoy November’s edition. ❤

Goalbusters

Goalbusters

Breaking through barriers is never easy. There will be individuals who will support your endeavors and have your back, and there will be others who belittle your goals and dreams. Then there are those on the same path as you. You join the flock and decide not to give up after all. You keep going for that goal.

That is what AYSO VIP League did for my perspective of finding a sport for children within the special needs community. A soccer organization that offers competitive sports for the mainstream and a non-competitive sport for those diagnosed with special needs (VIP), my husband and I signed up our ten-year-old daughter. We were not disappointed.

The season recently ended and, after having the enjoyment of watching my daughter’s confidence flourish on the field, I was so impressed. It was so positive and touching to watch how the VIP coaches and mainstream coaches collaborated in each game. Assigned as “buddies,” the team of mainstream kids patiently interacted with the VIP team. I watched inclusion and a balance of competitiveness of which the opposing team adjusted, based on the skill level of my daughter’s team. It was an hour of easygoing enjoyment where no mama or papa bear showed their fangs on the sidelines. The players played, the parents watched, and the coaches coached.

It was because of the coaches that these moments were able to occur with passion, focus and consistency—all of it done on a volunteer basis. The coaches, past and present, exemplified action that came from their hearts. As I recently sat with them enjoying a spaghetti dinner at the VIP Soccerfest costume party, I was amazed at how long they all have been dedicated to providing an inclusive sport for a special group of young individuals.

The fearless leader of my daughter’s team, “Goalbusters,” Peter Gaughan (aka Coach Pete) has volunteered with the AYSO VIP league for 21 years with some of those years as Director for the league. His spunky “let’s do this!” attitude was apparent to me the moment I meant him. To find out how long he has been giving his time and energy only added to my respect for him. His coaching assistant, Cecilia Romero-Chavez, became involved after moving from Richmond to Pleasant Hill and began looking for sports activities for her son. Through her “Googling,” she became part of AYSO VIP in 2006 and is currently the Division Coordinator. They are a duo that follows through with emails, practices and games. Also in attendance at the league’s Halloween celebration was Steve Forbes, who began volunteering in 1997. Even though he no longer volunteers as a coach, there he was attending this event for these special kids out of pure admiration for the division and all it stands for—inclusion. I truly felt surrounded by sincere human beings.

If you are a parent of a child diagnosed with a special need and are in doubt of which way to turn or how to find a compatible environment, just know that you are not alone in feeling overwhelmed or in despair. Uplifting, helpful, and inspiring resources are available in many different forms. Achieving milestones are possible for people of all abilities. There is a flock ready to include you to help you bust through any barriers and reach the goal. I know this to be true because my family and I started out with so much fear and despair. Now, ten years later, we get to witness our daughter “bust” out of any restrictive assumptions that society prematurely places, and she is achieving more goals than we ever could have imagined. Every child is born with VIP status but AYSO helped remind my daughter’s teammates that they are all “Goalbusters.”

Thank you AYSO VIP league coaches and volunteers. I hope my gratitude in this article is the fuel that keeps reminding all of you that your devoted actions do make a difference. It is your efforts that reminds me that there is always a flock that I can call upon. As Coach Pete would say at the end of every game, “Who you gonna call?”, I happily answer along with my daughter “Goalbusters!”

For more information about AYSO VIP League, please visit https://ayso.org/play/vip/

Alive East Bay Magazine

The Lunch Bunch

Stefanie Boggs-Johnson

Through my in-home beauty services business, I provided pedicure services for Jane’s 16th birthday celebration that included her closest friends. It was during this celebration that I became acquainted with Jane’s mother Kelly Meek and a group of inspirational teenagers as they shared the history of their friendship with Jane. This strong tie between them wasn’t just about showing up to a friend’s birthday but showing up for her life to face any mountains right alongside their best friend they have known since 2nd grade. It was that day that I knew I had to write about these beautiful human beings. They exemplify the true meaning of “It Takes A Village” as their love and loyalty continues to surround their friend, helping her to thrive within a family that isn’t just blood-related, but also love-related.

Never mistake someone who is in a wheelchair and needs assistance doing daily tasks as someone who is weak. If you currently have a stereotype about anyone diagnosed with special needs, then you need to meet Jane Coggins. This driven, unique and positive young lady wakes up every morning excited about her day. Her talent with digital animation through the assistance of her communication devices has her focused on pursuing animation courses. Persevering through any challenge, she matches the vision board that hangs in her bedroom with persistent action and, with the help of her mother Kelly, has recently contacted a media company for a job in the animation field.

Diagnosed with “SMA” which stands for Spinal Muscular Atrophy, her voluntary muscles do not receive the messages of the nerve cells (motor neurons) of her spinal cord. There are different levels of muscular limitation based on what age the onset of SMA occurs. The earlier the onset, the more affected the individual. Jane was diagnosed at 10 months old and receives 24-hour assistance. Do not dismay (fiery and creative Jane doesn’t, so why should we?) because the village surrounding her provides not only assistance with basic needs but with friendships where the connections run deep.

The first connection for Jane began with her friend Raquel, in kindergarten. Fast forward to 2nd grade at Buena Vista Elementary in Walnut Creek, California, through the inclusion focus within educational settings, children from mainstream classes were asked if they would like to partner up with individuals in the special needs’ classes

It was this blessed connection that formed “The Lunch Bunch” and added to Jane’s friend list was Madi, Gabi, Alisa, Kathryn and Amelia. These seven musketeers will show anyone a thing or two about never putting a person of any age or “disability” into a box. If you are ever worried about the future of our world, the teenagers that will soon take the paths provided for them along with paving new ones, please refer to this article as many times as needed. The driven, devoted and compassionate actions of this group spark the light of hope.

For example, Amelia started a bracelet fundraiser when they were all in 7th grade to help raise funds for a hot tub that provided physical therapy for Jane. Titled “Come Together for Jane,” Amelia and the rest of the Lunch Bunch raised $1000.00 selling the bracelets at school and in their neighborhood. Gabi dedicated a whole page of their school’s yearbook to share Jane’s story. They wrote a letter and obtained 300 signatures to petition the Acalanes Unified High School District to provide appropriate education as Jane transitioned from 8th grade into high school. This year they will all take part in the “Walk-n-Roll” fundraiser to help raise awareness and research funds for SMA. They all show up through major efforts but, most importantly, they all show up for Jane daily and keep her a part of their daily lives—hanging out, holidays, trick or treating, and birthday celebrations, to name a few.

As a mom who sees these displays of light towards her daughter while also looking within, Kelly expresses her gratitude for growing up in the Walnut Creek community. Being a parent who appreciates all that life offers, she practices Reiki and is active in the “Yoga Works” community, and even conducted a fundraiser called “Yoga From the Heart for Jane.”

Sitting down with the “Lunch Bunch” gives one a new perspective—one where you realize there are selfless people everywhere willing to encircle others with emotional, mental, physical, and spiritual support. But you won’t be “sitting” for long, as this group will pull you back up in so many wonderful ways.

So, as they prepare for the “Walk-n-Roll” fundraiser walk on August 24th at Kennedy Grove in El Sobrante, California, in an event benefitting SMA research and treatment, you’ll see a group of women who don’t just sit with a friend, they hold her hand as they all walk this thing called life—a good life indeed, with the “Lunch Bunch.”

For more information about the Walk-n-Roll, Cure SMA (Spinal Muscular Atrophy) contact Cure SMA at http://events.curesma.org/norcalwalk, or call 800.886.1762, or email info@curesma.org

Stefanie Boggs-Johnson is the author of “I See You, Little Naomi” and “I See You, Little Andrew.” Her educational children’s books promote special needs awareness and compassion. She is also a licensed cosmetologist and owner of For Every Season, a mobile beauty service for the special needs community. For more information visit ForEverySeasonServices.com

Alive East Bay Magazine

Mind Over Matter

Stefanie Boggs-Johnson
AliveEastBayTaylorTealPicJuly2019

During one of my “productive” bouts of checking my social media newsfeeds, I came upon a post by this awesome woman that was for families of young stroke survivors. Her post brought tears to my eyes because I am part of this flock of parents that still can “lose the wind” under my wings as I try to stay above the tough moments so that I can protect and be there for my ten year old daughter who shares the same medical mountain of being an en utero stroke survivor. It gave me chills that I was given an emotional refill of hope for my daughter’s future because of the gift of another’s triumph and courage to share their story. The mountain is never climbed alone. I read her post over and over again, knowing that her words had to be shared. May her story remind us all that our fears of the unknown are not the authors of our lives. Our story is not done. May we remember what truly matters—that only strength, hope, and love have the final say.

My name is Taylor Teal and I live in Denham Springs, Louisiana. I am 22 years old and a pediatric stroke survivor. Shortly after birth the nurse noticed I was having episodes of asphyxiation and I was tested for various conditions. After twenty-two hours it was determined I had a stroke in utero and was having seizures as a result. A CAT scan determined one third of my brain was severely damaged. Due to the amount of fluid on my brain, the doctors determined that the stroke had occurred at least 7-10 days before my birth.

My stroke caused the left side of my body to be very weak. I have limited use of my left arm or hand and I also walk with a limp. I started physical therapy at one month old and continued to do it until I was about 15 years old. Due to not fully being able to use my right arm and hand, I had struggles throughout my life and still do at times. Most of my struggles were physical tasks such as getting dressed, tying my shoes and blow-drying my hair. Some tasks I still have difficulty doing are opening things like water bottles, cutting food, picking up heavy things, and putting on jewelry.

As I got older, I taught myself how to do most everything by using one hand, like tying my shoes, dressing myself, and putting my hair in a pony-tail. Although I had struggles, my parents always found ways to help me do things my way. When I couldn’t ride a bike, they got me a tricycle. I wanted to play softball like “normal” kids, so they helped me learn to play by holding and swinging the bat with one hand. Those are a few examples.

It is important to think outside the box when it comes to figuring out how to do things, even though they may not be done the way an individual with no medical limitations would do them. I have always had high spirits and been very determined when it came to overcoming obstacles. Some negative effects on my family are that they constantly worry about the things I have a difficult time doing and how I will do certain things as I get older. A positive effect for them has been to see how strong, independent, and determined this has made me.

My experience of being a pediatric stroke survivor hasn’t always been easy, but it has made me the person I am today. I often wondered growing up “Why did this have to happen to me?” I wanted to be normal like other kids but knew I never would. I would just always remind myself that God made me this way and He did so for a reason. He knew I would be able to handle this situation and overcome so many things for which I am forever grateful. I am inspired by others I meet who are going through similar struggles in life and finding ways to thrive.

This past May I graduated college, earning a bachelor’s degree in Human Development and Family Studies. This has been my biggest accomplishment thus far in life. I am now working for a case management company as a support coordinator for people with special needs. I have always been extremely passionate towards individuals with special needs due to my own situation and the many years of being around others with special needs at therapy. I always knew I wanted to do something involving people with special needs and I am so thankful I am now able to do so.

My advice for individuals with special needs is to not let your situation define you, because it absolutely doesn’t. One must never give up no matter how frustrating or hard it can be at times; you can do anything you put your mind to. It is okay to be different and not “normal.” This was very hard for me to accept when I was younger. The older I got the more I realized that just because I am different, it does not mean that I am not able to do the same tasks or activities. My advice for families of those with special needs would be to never lose hope or give up on them. They need your help and support more than you know, so always try and stay positive. Even though it may not be an easy road and there will be difficult times, find the good in every situation. My advice to mainstream families would be do not treat those with special needs any different than any other individual.

Last but not least, always accept those with differences because it is okay to be different.

For more information regarding pediatric stroke, please visit: https://pediatricstrokewarriors.org/