Sensory Friends - Disability Blogs

Unmasking the Unsung Heroes hidden in the Moms of Children and Adults with Disabilities

Thu, 07 May 2026 03:41:44 GMT

This Sunday, every mother’s world will turn a bright shade of pastel pink and lavender. There may be brunch, there may be flowers, and there will definitely be many, many generic cards celebrating 'the world's best mom.'

And you know what? That’s lovely. Mothers are incredible.

But this year, I want to lift the veil and shine a light on a different kind of mother. A mother whose strength isn't just incredible; it’s seemingly impossible. This post is for the mothers of children—and the often-forgotten moms of adults—with disabilities.
This is for you. And for everyone else who can only sympathize, it’s a lesson in what true, unfiltered love looks like.

The Invisible Marathon Runner

Let's talk about resilience for a moment. It’s a word thrown around in a lot of popular punchlines. But how do you define it when the marathon has no finish line?
For the mom of a child with significant special needs, the traditional milestones (the first steps, the first words, the graduation, the wedding) might be a distant dream, or a hope that remains a longing. For them, "milestones" are measured in different terms. A new syllable. A five-minute period of calm. Learning to tie a shoe at age 15. The first time their adult son doesn't self-injure during a transition.

These moms are invisible marathon runners. They are running, day after day, without the cheers of a crowd, and they keep running because they have to.

When Advocacy Becomes Your Entire Identity

If you aren't in this world, you cannot fathom the level of advocacy disability moms must achieve. They don't just "care" for their sons and daugthers; they are experts on the legal, medical, and educational systems that constantly try to fail them.

They learn the 100+ acronyms of the educational system.
They manage intricate schedules of multiple medical specialists (think 10+).
They write appeals, testify in court, and fight for funding like their lives depend on it (because for their children, it often does).

When they become the parent of an adult with a disability, the fight changes, but it does not stop. They transition to guardianship, to housing lists with 15-year waits, and to a 'systems gap' that is often cruel.

These moms wear the armor of a lawyer and the stethoscope of a doctor, often sacrificing their own careers, relationships, and sanity to do so.

Grief and Love: The Dual Identity

The part that nobody talks about—the part that we all need to understand—is the grief. These moms have dual identities. They fiercely, passionately love the children they have. But they also experience a deep, recursive grief for the future and the independence they know their children may never have.

The grief isn't about rejection; it’s about protection. It is a deep, agonizing, life-long worry about "What happens when I’m gone?"

That worry is a shadow that never leaves them. It shapes their every decision, their sleep patterns, and their financial planning. And this is why we MUST celebrate them.

Because their love is complex, gritty, and profound. Because the smile of their sons and daughters with disabilities helps strengthen their ability to push past the pain that comes from isolation, stares, sneers and judgement. And they get it from family and friends – not just strangers.

**This Mother’s Day, How Do We Actually Support Them?**

So, this Sunday, if you know one of these moms, please don't just send a generic text. If you want to celebrate them, truly see them.

Skip the Flowers, Offer Time: These moms are in an unceasing battle. The single greatest gift you can give is respite. Offer to sit with their adult child, or watch their youngster for two hours, so they can actually go to the grocery store without rushing and forgetting something. Or maybe give them the gift of a nap. Offer actual, usable time.
Ask "How Are You?", Then Stop and Listen: We often ask about the child. Ask about her. Her identity, her needs, her dreams. Listen, without offering empty platitudes like "God only gives special kids to special parents."
Become an Ally: The ultimate form of support is showing up when it isn't easy. Show up to the inclusive community event. Educate yourself. Advocate for accessible spaces. Be the one person in her life who doesn't need an explanation for why they can't attend brunch.

Let’s Unmask the Unsung Heroes

Mothers of children and adults with disabilities, we see you. We see your armor. We see your tears. We see your unyielding, fierce, unpasteurized love. We see your grace, the Holy Spirit shines through you. And we admire it.
This Mother’s Day, we ask God to continue to bless you with resilience, strength, discernment, and we ask God to Bless you with tranquility and rest..

If this post resonated with you, please share it. Let’s unmask the real superheroes and give them the recognition they deserve. Moms, if you’re reading this, comment below: What is the one thing you actually need this Mother’s Day? Let’s help each other.

Building a Sanctuary for All Senses: 5 Inclusion Tips for Churches

Mon, 30 Mar 2026 01:14:13 GMT

One of the greatest challenges for families of loved ones with sensory related disabilities is the inability for the family to attend church service together. More often than not, churches are not letting individuals and families of children with disabilities know that they are willing to make accommodations for them. One of the greatest gifts any place of worship can give to their prospective parishioners is the gift of knowing all are truly welcome with care and sensitivity.

1. Create a "Sensory Map" or Guide

For many sensory friends, the unknown is the biggest barrier. A simple "What to Expect" guide on the church website can change everything.

The Tip: Mention where the loudest speakers are, where the brightest lights hit, and what the "smellscape" is like (e.g., "we use incense" or "we are a fragrance-free zone").
The Impact: It lowers anxiety by removing the element of surprise.

2. Offer a "Sensory Tool Kit" at the Door

Just as churches offer bulletins or hymnals, offer tools that help with regulation.

The Tip: Have a basket in the foyer with clean noise-canceling headphones, weighted lap pads, and quiet fidget tools (silicone tangles or marble loops).
The Impact: It signals that "stimming" or needing to regulate your nervous system is normalized and supported here.

3. Designate a "Sensory Break Room" (Not just a Cry Room)

Many churches have nurseries, but a "Sensory Break Room" is different. It’s a low-stimulation environment for any age. Having this type of room available gives children and adults the opportunity to escape experiencing sensory overload and regulate themselves or reset their bodies.

The Tip: Dim the lights, provide comfortable seating (like bean bags), and—if possible—live-stream the service into that room at a low volume.
The Impact: It allows a person to stay connected to the community without being overwhelmed by the main sanctuary's environment.

4. Provide Visual Schedules

For neurodivergent friends, knowing "how much longer" is a vital part of staying regulated.

The Tip: Use a printed or digital "Visual Schedule" in the bulletin or on the screen.
- Example: Worship (20 mins) -> Greeting (5 mins) -> Message (25 mins) -> Closing.
The Impact: It provides a "roadmap" for the brain, making the transition between service elements much smoother.

5. Practice "Radical Grace" for Movement

In many traditional settings, "reverence" is equated with "sitting still and being quiet." We can expand that definition.

The Tip: Encourage the congregation to understand that for some, movement (pacing in the back, rocking, or hand-flapping) is how they focus and worship.
The Impact: It shifts the culture from tolerance (ignoring the "distraction") to sensitivity and acceptance (recognizing different expressions of praise).

A Note for Leadership: Small changes, like dimming the house lights by 10% or ensuring the worship team doesn't use heavy perfumes, cost $0 but can make 100% of the difference for a sensory friend and their loved ones.

These few changes do not require much financial investment, just time, care, and understanding. However, the message will be well received by families of children and individuals with disabilities. Then they will know that the house of the Lord truly welcomes all with love and acceptance.

Starting the New School Year: Easing Anxiety with Grace, Routine, and Connection

Sat, 13 Sep 2025 03:18:57 GMT

The start of a new school year brings a mix of emotions—excitement, hope, and often, anxiety. For children and teens navigating sensory sensitivities, social transitions, or new environments, this season can feel overwhelming. But with intentional support, we can transform back-to-school jitters into moments of growth, courage, and connection.

Understanding Anxiety: A Natural Response to Change

Anxiety isn’t a flaw—it’s the brain’s way of preparing for uncertainty. Children and teens may experience:

Racing thoughts or stomachaches
Sleep disruptions or clinginess
Avoidance behaviors like “I don’t feel good” or “I don’t want to go”

These are signals, not setbacks. When we respond with empathy and structure, we help them to feel safe and empowered.

Practical Strategies to Reduce Back-to-School Anxiety

Here are evidence-informed tips drawn from child psychologists and educators:

1. Create Predictable Routines

Use visual schedules or storyboards to map out the morning and school day.
Practice the school route, lunch routine, or locker setup ahead of time.
Build in sensory-friendly transitions (quiet time, calming music, or movement breaks).

2. Model Emotional Reflection

Narrate your own feelings: “I feel nervous about this meeting, but I’ve done hard things before.”
Teach children and teens to label thoughts as “helpful” or “unhelpful” rather than “good” or “bad.”

3. Build Connection Before the First Day

Schedule playdates or meet-ups with classmates.
Visit the school and meet teachers or counselors in advance.
Create a “comfort kit” with affirmations, fidget tools, or a favorite photo.

4. Validate, Don’t Minimize
Instead of “Don’t worry,” try:
“It’s okay to feel nervous. I believe you can handle this.”
Validation builds trust and resilience.

5. Anchor in Faith and Encouragement
For families rooted in spiritual practices, pairing biblical stories with emotional literacy can be powerful. Remind children and teens:
“Just like Esther, you were made for such a time as this.” “Like David, you can face big feelings with courage and faith.”

Create devotional cards or coloring pages that blend scripture with calming affirmations.

For Caregivers: Your Calm Is Contagious

Children and teens absorb our energy. If we’re anxious, they often mirror it. Take time to:

Breathe deeply and ground yourself before drop-off
Limit doom-scrolling or comparison traps on social media
Celebrate small wins—like getting dressed or walking into class

Anxiety Is a Bridge, Not a Barrier

The goal is to acknowledge anxiety— and then walk through it together. With routines, reflection, and relational support, children can start the school year feeling seen, supported, and strong.

We wish you and your sons and daughters a fun, healthy, and successful school year!

Moving with Purpose: Fitness & Wellness Tips for Children and Adults with Disabilities

Tue, 12 Aug 2025 00:22:14 GMT

We’ve all heard about the importance of exercise in maintaining a healthier lifestyle, as it complements good eating habits. However, it’s sadly common for traditional home and school routines to overlook the unique needs of individuals with disabilities. Movement can become more than just exercise—it can be a form of advocacy, joy, and spiritual connection. Whether you're a parent, caregiver, educator, or someone navigating disability yourself, wellness is not a one-size-fits-all journey. It’s about honoring each body, each rhythm, and each story.

Here are some inclusive, sensory-friendly tips to help children and adults with disabilities thrive physically, emotionally, and spiritually.

Start with Sensory Awareness
Before jumping into movement, tune into sensory preferences:

Use weighted blankets or compression vests to support proprioception before or after activity.
Offer noise-canceling headphones or soft background music to reduce auditory overload.
Create a visual schedule or movement chart with icons or photos to preview each step.

This builds trust and predictability—especially for neurodiverse individuals or nonspeaking children.

Embrace Adaptive Movement

Fitness doesn’t have to mean treadmills or gym memberships. Try:

Chair yoga (an example could be chair squats or seated stretches) for mobility support.
Resistance bands for gentle strength-building.
Soldier Marching – marching in place.
Step-ups – use a small step-stool, and if needed, hold hands with the person if they need help with balance. Start with 5 steps (or 10 if the person is up to it).
Walking – taking a short distance walk outside and increasing it by a few minutes each time.
Indoor Tag – I play this with my son, and he loves it. We tag each other as we run back and forth from one end of the house to the other.
Water-based activities like swimming or aquatic therapy which reduce joint strain and offer calming sensory input.
Dance parties, wheelchair Zumba, or movement games that celebrate joy over precision.

The goal is engagement, not perfection.

Make It Social and Relational

Wellness is more sustainable when it’s shared and tied into a central message:

Pair movement with storytelling, music, or prayer to create emotional connection.
Invite siblings, friends, school or church groups to join in inclusive activities.
Use partner stretches or mirrored movements to build trust and body awareness.

For children, consider peer buddies or family fitness nights that center inclusion.

Nourish the Whole Person

Wellness includes nutrition, hydration, and emotional care:

Offer visual meal planners or tactile food charts for choice-making.
Use color-coded water bottles or timers to encourage hydration.
Create calm-down corners with breathing tools, scripture cards, or sensory bins for emotional regulation.

For adults, consider faith-based journaling prompts or guided meditations that integrate spiritual wellness.

Celebrate Every Victory

Progress looks different for everyone. Honor:

A new stretch held for 10 seconds.
A walk to the mailbox.
A moment of stillness or a deep breath taken with intention.

Use visual progress trackers, affirmation cards, or “I did it!” stickers to reinforce growth. And don’t forget to celebrate with joy—dance, sing, or pray together.

Bonus: Faith & Movement Integration

For those who find strength in spiritual practice:

Pair movement with scripture-based affirmations (“I am fearfully and wonderfully made” – Psalm 139:14).

Use biblical, heroic men or women as movement themes—e.g., “Deborah’s strength stretch” or “David’s dance.”
Create devotional movement cards that combine prayer, breathwork, and gentle exercise.

Fitness and wellness are not about fixing bodies—they’re about honoring them. Every movement, no matter how small, is a declaration of dignity, resilience, and divine design.

“Why the book, “God, Can You Hear My Nonspeaking Voice?” Can Help your Child with Disabilities to Connect with God through Prayer.”

Thu, 03 Apr 2025 02:04:42 GMT

How do we teach our nonspeaking children with disabilities to pray? Do they know they can connect with the Lord? This book not only teaches us that praying and talking to God is easier than we think, it teaches us that God hears all of our thoughts and voices, even our nonspeaking ones.

The journey that each author travels from the creative thought process to the moment the book is published is uniquely different for them all. I love hearing their stories just as much as I enjoy sharing mine about how the idea to write a book about a child with a disability praying to God would spark my publishing journey.

When my son Richie was first diagnosed with autism at two years old, I didn’t put much thought into how he would be able to lead a life of faith. Richie was baptized at six months old, as was tradition in our family. Once he was diagnosed a couple of years later, all of my focus was centered on getting him as much speech, occupational and behavioral therapy as humanly possible. Of course, I also researched and invested in music therapy, vitamins and supplements, massage therapy and countless other treatment options over the years. One of the things that writing this post made me acutely aware of was the fact that it never occurred to me to pray to God for help, healing or direction. Atleast, not until many years later.

Richie was sixteen when his behavior became more challenging. He would exhibit aggressive behavior towards others, self-injurious behavior and punch holes in our walls or destroy his room. We started positive behavior support and biomedical interventions for treating anxiety, insomnia and challenging behavior. We even tried medical cannabis for a few years. We would have long periods of time for which he was calm and had improved behavior and then there were times where we would see new behaviors surface or old ones come back. I soon realized I needed the kind of help that could only come from God. I started going to church, I found a bible study group and prayed regularly. My faith in our triune God was restored, but it would be a few years later that our wonderful God would give this story to me.

I thought that it would be impossible for me to raise Richie in any kind of faith, since many of the churches around us were not disability friendly or accommodating. Richie wasn't going to sit still or remain quiet for long. In fact, his behavior would be too disruptive. So, I began praying with Richie every night. It took some time, but he learned the Lord's prayer. At first, I would recite a few words at a time and have him repeat them. When it seemed like he memorized it, I would have him start a few words at at time and I would repeat him.

In this clip, Richie is 23-years-old. He was ready for bed but as soon as I ask him to go to the Lord in prayer, notice how he's always ready to pray with me.

The best part of my day is listening to him recite the Lord's prayer. Even with his limited ability to speak, you can hear that he does know the Lord's prayer, even though it's not spoken clearly.

To this day, it's magical to hear him recite the Lord's prayer. I cherish the gift of praying with him.

It was one day, while taking a shower, that the Lord gave me the entire book, “God, Can You Hear My Non-speaking Voice?” I wrote it in one day, but it would take a few years before it was published – looking for illustrators and a publishing process I could afford.

I had two other children book's that were written and ready to print, but this project, God's book, would be published first.

It was the most important project I had ever started and I knew the book was special. So special that it met the approval of two beautiful siblings.

These two adorable kids (who just happen to be my grandkids) read the book and gave it their approval!

Oliver (age 4) and Charlotte (age 7)

"God, Can You Hear My Nonspeaking Voice," provides a blueprint for how we can help children with disabilities to connect with the Lord. Reading this book to our kids, whether they speak or not, is a great way to illustrate that the Lord is the only one who can hear our thoughts. It's a great example of prayer for all of us really.

What do we say to the Lord? How do we pray? What do we talk to God about? The answer is pretty simple, as the book illustrates. We can pray about and for everything and anyone that is important to us (or not), and we can talk to God about everything and anything that is happening in our lives and/or around us. God knows what is in our hearts, He hears our thoughts and most importantly - He hears all of our voices, including our nonspeaking ones.

Online Book reviews:

This book is absolutely perfect to read to littles or for intermediate readers! Both of my kids adored it, and related to the story as well. So happy I was able to snag a few copies to share with their teachers! - Samantha S.

Beautiful! This is such a simple, yet powerful book. A wonderful conversation between a non speaking child and God. Christine has written a prayer that is for children and adults of all ages.
A touching way a mother expresses how she interprets her non speaking child's thoughts and appreciation to the people, and God through his perspective. - Sue L

Great book for children, and even adults!
This book is a great & simple read for children & adults. Understanding that God loves us, and we must learn to pray & become closer to God no matter what we may be going through. I love how the author included The Lords Prayer at the end. Emily G.

Grab your copy of "God, Can You Hear My Nonspeaking Voice" at

Amazon Barnes & Noble Books-a-Million

If you've read the book, please leave us your thoughts!

“Black History Month Reminds us We Are All Promised Life, Liberty and the Pursuit of Happiness.”

Sat, 15 Feb 2025 20:42:48 GMT

When I think of Black History Month, I think of celebrating the achievements and wonderful contributions made by Black Americans and could easily list and write about them in a post of its own. Among my favorite, influential people, of course, are Dr. Martin Luther King (I can still listen to his speeches with awe), Oprah Winfrey, Maya Angelou, Tyler Perry, Michelle Obama, just to name a few!

Mostly, I am reminded of how the civil rights movement paved the way for the disability community and beyond. During the time of the civil rights movement, Black Americans were just advocating for getting their fair shake in community living. They wanted their kids to go to the school they were zoned for, they wanted to sit anywhere they pleased while using public transportation, they wanted to be equally integrated into the society that they meaningfully contributed to - just as their fellow community members had.

Then I think about how the disability rights movement was so deeply intertwined with the civil rights movement, and how these brilliant and brave Black leaders played such important roles in this grand achievement. I wonder if they ever imagined that their fight would continue to serve the many diverse populations still fighting the same fight so many decades later? I don’t imagine they focused on things so far ahead. They were fighting to survive each day during very turbulent times.

Unbeknownst to these heroes, The Civil Rights Movement laid the groundwork for the Disability Rights Movement, Women’s Rights Movement, Gay Rights Movement, Indigenous Rights Movement, Latinx Movement, and countless more, in several monumental ways:

Legal Precedents: The Civil Rights Movement challenged and overturned discriminatory laws, setting legal precedents that later helped disability rights activists. For example, the Brown v. Board of Education decision in 1954, which ended legal segregation in public schools, paved the way for similar challenges to discriminatory practices against people with disabilities.
Activism and Organizing: Disability and Women’s Rights activists adopted and successfully used sit-ins, marches, and created awareness campaigns used by civil rights activists. The 504 Sit-in in 1977, where disability rights activists occupied a federal building to demand the enforcement of Section 504 of the Rehabilitation Act, was directly inspired by civil rights protests.
Intersectionality: The Latinx Community is now taking center stage in highlighting and recognizing how Latinos, Individuals with disabilities, Native Americans, and other communities from marginalized racial and ethnic backgrounds, should be recognized, included, and well represented across legislation, social justice, education, and in Hollywood. Proving that lacking in representation of all communities is also a form of oppression.
Public Awareness: The Civil Rights Movement raised public awareness about the injustices faced by marginalized groups, creating the framework and outline for the Disability Rights Movement and other movements facing similar discriminating situations. The visibility of civil rights issues helped to break down societal barriers and foster empathy for other marginalized groups.
Legislative Impact: The Civil Rights Movement led to the passage of key legislation, such as the Civil Rights Act of 1964 and the Voting Rights Act of 1965, which provided a framework for future anti-discrimination laws, including the Americans with Disabilities Act (ADA) of 1990. Native Americans used the Civil Rights Movement as their model for fighting for their rights for land and against discrimination.

Many of today’s movement groups are built on the foundations of the same truth that supported the civil rights movement. The undeniable fact is that we are all created equally by God and we are all entitle to be treated fairly and equally.

The synergy between these movements demonstrates the power of collective action and the importance of solidarity in the fight for civil rights and social justice.

Netflix has "Dog Gone" Done it Again with another Family Favorite Hit!

Sat, 14 Jan 2023 17:57:12 GMT

This month Netflix released a new family featured film called “Dog Gone.” It’s a movie about a young man, Fielding, and his journey in self-discovery as a college graduate. In a moment of spontaneity, he brings a dog named Gonker into his life that impacts the lives of his family, friends and community in unexpected ways.

My family and I watched this film, and while I will admit, I won’t pass on a film that features my childhood heartthrob, Rob Lowe, who is featured in the film as Fielding’s dad – but I was drawn to the storyline that inspires hope, faith, and love. The love between father and son, the love between mother and family, and the love between man and his best friend.

The lengths this family goes to for the love of a family dog is unprecedented. They took the words, “Don’t Give Up Hope,” to a level way beyond the ordinary use of a daily punchline. They brought belief of the impossible to possible in their immediate community and then our entire nation. I laughed, I cried and I got sucked into the emotional ties leading to the family’s outcome and what was to be the fate of the family dog named Gonker. Gonker, a dog, who unbeknownst to him or the family, would have the ability to restore relationships, bring a community together and rebirth hope on a national level. Sorry, I won’t be offering any spoilers in this post!

However, I will add that the film, which is also based on a true story, adding an element of authenticity for the heart-warming movie, also illuminates the kind of community bonds we all long for and work towards. A community who cares and volunteers to help their fellow citizens in acts of kindness, both random and intentional.

When the mood for a feel-good film strikes, break out some pop-corn, try to gather your loved ones and and check-out the movie for yourself. You won’t be disappointed in this soon to be a favorite for all four-legged friends!

"Please note I was not paid this review. However, I was allowed to preview the film in exchange of my thoughts. All opinions are my own."

Special Needs Families and the Caregivers they Need

Tue, 15 Nov 2022 03:12:21 GMT

Special needs families celebrate the joys of parenthood with many triumphant milestones and memorable experiences. We also get to witness the beauty in acts of kindness and selflessness in how people, unrelated to our family, behave with our special needs children. We get to see these acts of kindness in teachers, therapists and other service providers. We’ll also see it in caregivers who provide our family respite services and full time support. However, finding caregivers for special needs families presents many challenges that range from identifying caregivers to finding one who is a good match for special needs families to keeping a caregiver long-term.

Identifying quality caregivers has pretty much been a timeless issue for many special needs families. Over the past decade, our family has been able to find one quality caregiver annually for the past few years and this was pre-COVID. Sadly, the caregivers we hired would remain for just a few months and move on due to circumstances that have involved finance, family or health issues. We are now living in unique times as we learn how to deal with post-pandemic protocols, and the impact it has had on retail and service industries is profoundly devastating. Caregivers have become apprehensive about working in direct contact with clients and others have opted to pursue work at home opportunities. Who can blame them? The pay caregivers are offered historically isn't anything to dissuade their thoughts on career changes and over the years, caregivers have told me it felt like a thankless job.

On the flip side, many caregivers have also told me that they couldn’t imagine doing any other type of work. Inspired by their parents, siblings, family members or friends with disabilities, they saw and felt the rewards of helping someone in need. Many parents who worked with caregivers were inspired by how their family situation was helped and pursued the career for themselves. The passion for helping those in need of a friend, companion, personal care assistant and beyond offers a sense of gratification that money simply cannot match. However, make no mistake – Caregivers should be better compensated. The average compensation for a caregiver nationwide is anywhere from $9.00 to $15.00 an hour. It’s no wonder we’re struggling with a shortage of caregiving applicants when McDonalds is starting new employees with $16.00 an hour.

Poor compensation and benefits packages leads to providers feeling devalued and not respected. These emotions often lead to resentment and overall unhappiness. An employee who feels this way is non-motivated and less likely to do a good job. This may result in the client being neglected or mistreated.

Employees who feel appreciated, well compensated with the promise of greater opportunities in the work place are more likely to do a good job and go above and beyond the call of duty. Caregivers need to feel valued, appreciated, well-compensated and offered continuous training with the prospect of doing greater things. For instance, a caregiver who does a superb job can be groomed to become a supervisor who trains new caregivers and develops daily activity plans for clients. A well developed caregiving pay package could improve the quality of life of the caregiver, the client and the overall family.

My son Richie is this phenomenal young man who struggles to communicate effectively with others. This often causes him to feel frustrated and results in behavioral issues. Some of these behaviors include self-injury (self-slapping), aggression towards others, or destruction of property (holes in walls, throwing furniture, etc.). These behaviors often cause before and after school centers or other programs the option to refuse or discontinue program services for people like Richie. When appropriate care is unavailable, this leaves special needs parents like myself with one of two options – quit our jobs (like I did) and stay home to care for our loved ones, or consider residential placement, also like I did when working from home no longer supplemented the income our family needed. While there is no shame in choosing to do either of these things, it’s a difficult situation when it’s forced upon you and your family. No special needs family should ever be forced to make this decision.

Caregivers are essential to all families, not just families of children and individuals with disabilities. Families who are caring for their elderly parents, grandparents, and other family members who have issues with mobility and conditions that requires daily attention and care. At some point in our lives, we all may look to outsourcing care for loved ones. The goal is always the same, we want our loved ones safe, loved, cared for with their dignity in mind, happy, and close to us.

Who will care for my daughter tomorrow?

Caregivers have one of the most important and noble roles in our society and yet they are not well compensated for the incredibly challenging work they do. Luckily, agencies are starting to realize just how difficult it is to fill caregiving positions and have started offering better compensation packages. Recently, in June of this year, the state of Florida passed the Freedom First Budget bill which increased Medicaid providers minimum wage to $15 an hour. It’s a great start – but the pot is not quite yet sweet enough. There is still a shortage of care providers in our state. The caregiving industry still needs agencies to have many caregiving people to back up vacation time, sick days, and doctor appointments or other emergencies. It’s a job like anyone else’s and they should have adequate coverage for handling these things. What good is having an excellent caregiver working with your family if you have to experience anxiety every time they call off?

My hope would be that state and local agencies collaborate to create better compensation and training packages that appeal to those with caregiving as a career goal. I’m a firm believer in reviewing existing resources for solving an issue. For example, why not offer college students who are interested in the medical and health industry the opportunity to work as a caregiver in exchange for college credits?

The need for caregivers in the special needs community is growing rapidly. This bi-partisan issue should bring us together to find a solution for ending the sad shortage of these wonderful providers. Quality caregivers are crucial to the improved quality of lives of our children and loved ones. Special needs children and adults thrive in their natural environments and caregivers can offer special needs children and adults the opportunity to live happy and fruitful lives at home with their families or independently in their own place with the right supports.

5 Fun Ideas for Having a Safe and Fun Halloween During a Pandemic

Thu, 29 Oct 2020 23:00:02 GMT

Whether you plan to keep your Trick or Treat plans or stay in this Halloween, there are ways to stay safe and have fun without cancelling a celebration most kids look forward to each year! This has been an unusual year for all of us. Since the start of this year and being struck with the COVID 19 pandemic, we have all found innovative ways to learn, work, entertain ourselves, and spend quality time with family and friends who are near and far.

Celebrating Halloween and other festive holidays coming up can still be enjoyed – it will just be a little different. No matter how different we all choose to celebrate this year, there’s no reason why we can’t find ways to make children smile and give them a little fun!

Costume Ideas

Exposure to COVID and other viruses remains a huge concern for all of us, and keeping one another healthy is still a priority in our communities for staying safe. There are quite a few costumes that help with keeping safety in mind.

Super Heroes and Villains

There are so many Super Heroes that adhere to the pandemic rules of safety. Spiderman, DeadPool, Iron Man, Black Panther, The Flash, Dr. Doom, Storm Troopers, and Darth Vader, just to name a few!

Spooky Ghouls and Monsters

When you start to think about how much we cover up during Halloween with or without taking pandemic caution, it suddenly doesn’t seem so hard to do! Ghosts, Skeletons, and the Scream Villain are just a few ideas to get your creative thinking caps on!

Girly Costumes and First Responders

Belly Dancers, Nurses, and Doctors are also perfect costume ideas or wearing face masks!

And who says a Princess, Pirate, or any costume of your child’s choice can’t adorn a cool looking face mask with her tiara, his sword or wand?

Table or Hang Your Tricks or Treats!

Social distancing still needs to be practiced, but we can still make our trick or treaters smile! Prepare a table outside – either on your porch or driveway - with your candy and treats in a bowl. I’d put a sign that says, “Please take one.” Most parents and kids will honor this and take just one. We did this one year when we weren’t home and when we came home there was still candy in the bowl!

Another idea we’re doing this year (I’ll post pictures later) is taping a bead necklace with a candy bar on our garage door for kids to have fun picking! This is also a great way for our kids with sensory issues to get them reaching and pulling the candy off the garage! We’ll also set out a table with a bowl of candy too, but we thought this might add an element of fun for the kids! We plan to leave a bottle of hand sanitizer on the table too!

Six Feet of Separation

One of my favorite things to do each year is greet and treat the many children and teens who knock on our door in search of candy! I love guessing the costumes and seeing their smiling faces. You can still enjoy watching all the kids dressed in their best by sitting outside and placing the candy in a bowl on a table six feet away. Many families will appreciate your consideration for everyone’s safety.

Add a Hallowseek Candy Hunt to Your Annual Tradition

In addition to the classic fun with pumpkin carving, decorating cookies, and creating your own face masks - We can make the Halloween day extra fun by making your kids hunt for candy at home – inside and outside. You can easily make a game out of this by getting a little prize for the child who finds the most candy or the child who finds all hidden pieces of candy.

Anonymously “Boo” Your Neighbors

This latest and greatest trending tradition is fun to do with the kids and has become something flattered recipients welcome each year. It’s a simple Halloween gesture that includes placing an anonymous treat or gift (nothing is too small) at the door-step of your lucky friend or neighbor. You can choose to do as many “Boos” as you wish, but the idea is to write a little note that let’s them know they’ve been “Booed!” The ideas for Booing people are endless. They can be baskets, flowers, or even a little box of candy. So long as they have a note attached with a short and sweet message that sounds like this:

“You’ve Been Booed!”
Halloween’s Witches and Goblins are flying near
Don’t waste time - Pass on this Boo Cheer
Select a friend and start your mission
By celebrating friendship with this holiday tradition!"

You can totally steal my made up Boo message, it’s all good in love and friendship – besides you’ll make someone’s day!

Treating Autism with Medical Cannabis Part VI: "Our Family's Results!"

Sun, 06 Sep 2020 00:58:00 GMT

Our journey as a family exploring the healing power of cannabis for our son Richie has been a long learning experience. While the learning curve was an arduous one, I’m happy to report that we’ve found the right cannabis medication that works well for Richie. The most interesting part of my experience was how much I had to learn. Thankfully, I had Dr. David Berger of Wholistic Releaf for guidance, other parents for support, their shared experiences, and online resources for further research.

Medical Cannabis is not dangerous

For prescribed drugs that are approved by the FDA, there are side effects, some are dangerous or life threatening, some are mild, and some may cause minor or great discomfort. If any drug is taken for long periods of time, there will be concern for correct dosing.

When it comes to medical cannabis, there is one fundamental and important fact that no one can deny (medical professionals, drug enforcement agency representatives, and concerned citizens): it is certainly an alternative medicine with very low risk.

Now, I’m not suggesting that negative side effects will not occur. It is very possible to experience discomfort due to feeling too sleepy, disoriented, anxiety, paranoia, dizzy, unmotivated (couch-lock), uncomfortable with dry eyes, dry mouth, headaches, or other side effects. If you have these reactions, the kind of good news is you can stop taking the medicine immediately (without having to wean yourself off like some other drugs) and it may take several hours before these effects wear off. The bad news is if you are treating a loved one with these strains, (like my son Richie who has autism), this could trigger more challenging behavior. Medical cannabis provides different results and experiences for everyone.

It’s important to become educated on the endocannaboid system and strains. Leafly provides a plethora of information on the endocannabinoid system as well as a comprehensive list of hundreds of cannabis strains, reported use for effectiveness and side effects, and where they are available across the country.

Treatment takes Patience and Time

I had to keep reminding myself there is no single prescribed strain for treating autism or any specific condition in need of treatment. It's good to learn about what is working for others with similar symptoms, but always keep in mind that what works for one person will not necessarily work for another. We were given specific instructions by Dr. Berger to start by administering low doses of CBD and increasing slowly as needed until we saw improvement in any of Richie’s symptoms.

For Richie, we were looking to relieve his anxiety and eliminate his fits of violent aggression towards others (this included pinching, hitting, kicking, biting, etc.). We also wanted to stop his self-injurious behaviors (self-slapping, head banging, etc.) and destruction of property (punching holes in the walls, breaking glass, etc.).

Finding the Solution that Works for Richie

After many months of trial and error, we discovered that high doses of CBD without THC proved to bring Richie great relief. As we gradually increased his dose of CBD, within six weeks we noted that Richie’s aggression towards others, self-slapping, and other undesirable behaviors started to decrease daily and his overall mood improved as well.

Although, our family was and still is using multiple modes of treatment, we are convinced that not only is the high dose of CBD helping to improve Richie’s mood and overall quality of life, Richie’s neurologist and Dr. Berger believe it’s also helping to keep the other prescribed drugs at a low dose.

How is Richie doing Today?

Today, our recorded data shows all of Richie's challenging behavior at an all time low. Richie is doing fantastic at controlling his behavior. Richie is talking more, learning more, spelling, teaching us about his interests, and doing pretty much everything with us - it is truly exciting times.

Planning for the Future

For now, we continue to keep Richie on CBD medical treatment, maintain our Positive Behavior Support Plan, continue with his current medications, and most importantly, we will always presume competence in Richie and his ability to learn new things.

Our plan is to work with Richie's doctors and discuss how we can slowly begin to decrease his other prescription medications until he can come off them completely. We will do this when we have documented reports that show Richie’s aggressive and self-injurious behaviors are at “zero” for at least two months. We will continue to discuss, review and plan on an appropriate exit plan for the traditional medications with Richie's doctors and behavior team.

For now we love seeing him relieved from anxiety and pain. We love seeing him happy and smiling. We love watching him enjoy his life! Our overall family life is happier than we've ever been with the help of medical cannabis.

We wish you luck on your journey to finding relief with medical cannabis!

For more information about Dr. Berger and his Tampa Bay practice, please visit Wholistic Releaf.

Read our previous segment Part V: Visiting a Medical Cannabis Dispensary:
Things to know before you go!

Although we received services as part of our collaboration with Wholistic Releaf for raising awareness on treating autism with medical cannabis, all opinions expressed are my own.

On Father’s Day Let's Pay Tribute to Dad with 7 Unique Gift Ideas

Mon, 15 Jun 2020 02:38:35 GMT

As a blended family, we celebrate Fathers Day in many ways. We honor my husband Kirk for being a great dad to his son Tiki, and a great step-dad to my son Richie. The relationship Kirk has with both sons are unique to his individual connection to them, but he loves them and I’m grateful for the love I get to witness everyday between father and son and stepson. This Father’s Day I plan to spoil my husband. I’m going to make him his favorite breakfast; Ackee and Salt-fish (Jamaica's National Dish), his favorite dinner (stewed Oxtails with Butter Beans with Rice and Beans), and I’m planning on surprising him with several unique gifts this year that just might interest you too!

If you're looking to celebrate the dad in your life on Father's Day, here are some great gift ideas for you as well!

Personalized Wood Heart Map for Dad

This is one of my favorite picks because it can be personalized to the birth or adoption cities for each child, or relevant to other memories or milestones, such as dwelling cities Dad has lived in the past. The idea of making it a strong connection to Dad’s history or past with this gift provides a strong connection to things and people who are important to him.

Personalized Hammer Gift Set

I absolutely love the idea of giving the handy-man in our lives this gift set that says it all. A hammer is one of the most used tools in any home and giving that special dad in your life this one will be used over and over again with a smile. You can choose the wording on the handle to make it extra special.

Personalized Dundie Trophy

If you’re a fan of the television sitcom “The Office,” then you’ll love giving dad his very own Dundie Award! You can write your very own private message of gratitude and love to dad with a trophy that highlights him as the best Dad in the world!

Daddy Gift Docking Station

This is an awesome gift idea for dads who want to be efficient with their devices and accessories. You can choose your color and engrave it with his initials too! I love this gift because it’s practical, cool, and I think every dad will truly appreciate it!

All in One 15 Piece Lantern Set

This is a fantastic gift idea for dads who are campers, fisherman or the all-around outdoors men. All dads like to be equipped with essential tools and remember – dad can never have too many flashlights or lanterns. Any father would love this gift and make good use of it too!

Dad Joke Loading T-Shirt

I think one thing all dads have in common is there inability to tell a joke that the family actually gets! At our home, Kirk tells a joke and he is always the only one laughing! This t-shirt says it all for the Dad who loves to tell jokes that no one laughs at but everyone still loves.

Best Step-Dad in the Galaxy T-Shirt

This is another cool t-shirt that any dad would be proud to wear. I happened to have purchased one for Kirk from Richie because of how awesome and loved he is. It’s Star Wars themed and it’s the best compliment in the world.

Father’s Day is a day to honor the men who stepped up to parent children who were gifted to them by the miracle of birth or by marriage. Either way, it is our job to love them and let them know how much they are truly appreciated on this day and every day.

So, make the dad in your life his favorite breakfast, lunch or dinner. Ask him to do something you know he enjoys doing and shower him with love and laughter throughout the day!

Disclosure: Please note that there are Affiliate links in this post and I may be compensated if you purchase these items using these links at no additional cost to you.

Barbie is on the Diversity and Inclusion Move and It’s Powerful!

Thu, 28 May 2020 03:35:57 GMT

All Photos in this Post are by Mattel

Over the years, we have all witnessed the famous transformation of our beloved Mattel Barbie doll and we have enjoyed every moment of it. Decades ago, Barbie’s representation of the little girls who loved and played with her was pretty marginal. Barbie was blonde with blue eyes for many years before she finally had brown hair! Still, her figure was impossibly thin, and she only ever seemed flawless and perfect. I’m a seventies child and had quite the impressive collection of dolls as a child. The only doll that came close to representing me was my Cher doll - and she looked nothing like me!

All over the world, this thin figured, blue-eyed, blonde bombshell of a doll was the woman all little girls aspired to be. Yet, they still yearned for a doll that represented them in some way. Mattel’s “We Are Barbie” initiative features a line of dolls that promotes diversity and inclusion. The collection has expanded its representation of how different everyone looks, dresses, and accessorizes. From cultural, gender, occupational, and physical features, Barbie has worked hard to represent the diversity in children worldwide.

Since Mattel first introduced the Barbie doll on March 9, 1959, we have seen the doll evolve for over six decades. The doll was unique in that it was the first adult looking doll that inspired a different kind of imaginative play for children. Until Barbie came along, girls only played with baby dolls. To help nurture the growing imagination for little girls, Mattel’s ingenuity later created a family of dolls for Barbie that started with her boyfriend Ken, sister Skipper, and twin siblings Todd and Tuti. After that, the changes in Barbies looks, accessories, and background continued to inspire kids and how they saw the possibilities in themselves while playing with each new Barbie doll creation.

Although at first, fashion may have seemed to be Barbie’s best asset, along with her seemingly embellished way of living (Barbie house, Camper, cool convertible, etc.), she also enlightened children with her progressive advancements in the work industry. We have seen Barbie take many career paths and it was fun for all of us see her take a strong stance as a woman who can do anything a man can do.

It was exciting for me to learn about the new line of inspiring women recently released by Mattel. I think it was a fantastic way to introduce historical events that helped pave the way for our youth and their future ambitions. I did read a post criticizing Mattel about how the “Rosa Parks” doll was too light skinned in an unbelievably crude way. Really? This is the first thing that comes to mind when a company immortalizes a historical figure in such a positive way? I suppose you really can’t please everyone. In my opinion, the doll captures Rosa Parks perfectly. The Rosa Parks doll is lovely, inspiring and for those who actually have seen live footage and photos of her – she did have (in my opinion) light skin. But who cares! The doll represents a moment in history that is to be remembered and celebrated.

Let’s try to keep our minds on the prize and keep our unhelpful criticisms on the inside. What is the prize? It’s the central message that woman can be great. Women can change the world. They can make a difference. This is the message we want our children to hear, see and learn. The collection also includes other greats, such as, Ella Fitzgerald, Florence Nightingale, Billy Jean King, Sally Ride and many others.

Barbie has created a doll that includes a child’s choice of 176 dolls, 9 body types, 35 skin tones, and 94 hair styles. The dolls represent and bring children more than just imaginative play. It illustrates messages of equality, value, respect, honor and duty. Important messages that all children can incorporate into play and that is just simply a beautiful thing.

But Mattel didn’t stop there. Todays Barbie also represents a population that almost always escapes toy creators. The disability community almost never sees themselves represented in any facet of the mainstream retail toy market. Adaptive toys are a concept usually known to companies who specialize in the disability field. It was only recently that Microsoft and Google (among others) realized there is a strong market being missed. You guessed it - the disability community.

When Barbie started a line featuring differently-abled dolls - How did the disability community respond?

With a collective sigh of gratitude. Yes, more of this please!

Although there are many disabilities that do not change a person's appearance, such as Autism, Epilepsy, and others, maybe Mattel would consider creating a line of awareness clothing and accessories for Barbie dolls. How cool would that be? Still I enjoy watching the Barbie doll continue to evolve and impress the world with their new additions and creations.

What’s my favorite doll so far? I would have to say it’s the Barbie doll with Virgilio (featured above at the far right). What’s your favorite Barbie doll?

5 Quarantine Tips for Dealing with Challenging Behavior in Kids with Special Needs

Sun, 03 May 2020 03:32:54 GMT

We are all treading through uncharted territory right now as we are dealing with having to take caution against a fast spreading illness, decreased hours or losing our pay entirely, helping our kids with online learning - while balancing our already stressful lives before COVID 19 and all that followed. Add to this the struggles that come with challenging behavior exhibited by our children and teens with special needs and we’ve got a well-stirred recipe for anxiety and some serious meltdowns.

I have to admit that like many fellow special needs parents, I am tired. Working part-time from home, balancing writing, household responsibilities and relationship bonding with all family members in our home was difficult enough to juggle pre-Covid19 crisis. Now, I’ve added more hours of one-on-one teaching sessions with my 18 year-old-son Richie (who - as many of you already - know has autism) into the mix and now my attention is in higher demand than ever before. There is also tele-therapy sessions with several different therapists and other online meetings I must attend. It is different times indeed. And while I am starting this post with a little whining, I really am grateful for the services we can continue to receive to help support Richie and his retention of what he’s learned.

However, there are different challenges for special needs parents and distance learning. Many of our kids are not operating on auto pilot when told to begin the online courses assigned to them on their school’s e-program. Many special needs parents must play the absolute role of the therapists and teachers for our children. Whether we are modeling the work with the assistance and guidance from our children’s educators or following the written content on how to present and teach the lesson to our child, we are not walking away while they do the work. We help support their learning with hands on instruction.

When it comes to dealing with challenging behavior, this also presents additional struggles for us to contend with. We have all had to improvise our daily routines, change rules around and figure out how to make sure our kids are comfortable, learning, and anxiety free amidst these unique times.

I have to confess that I have not yet mastered this completely and that's not really the goal. My goal is to teach Richie how to deal with his frustration and anxiety. Richie still gets mad and when he does, he slaps himself on the leg, stomach, face or head. He has recently brought back banging on the walls for dealing with his frustration (this was a behavior from the past). He may also decide to tap me or threaten to hit me when he’s in close proximity. Most times, I handle it exactly as our behavior team has instructed: ignore junk behavior and promote communication. But there are times when I don’t. I lose my patience. I might yell at Richie out of frustration, or push him away from me to avoid getting hit.

In the world of behavior, these are on the list of things headlined under “Do Not Do This!” They provide Richie the attention he wanted all along and reinforces the bad behavior. I know this, but I’m human and make many mistakes with my parenting. So, when I make these mistakes, I dust myself off, take a deep breath and remind myself that tomorrow is another day for me to get this right.

What I’d like to mention is that when I do get it right, things really go well. In addition to having a positive behavior support plan in place, what does it look like to use the following strategies?

1. Review or Develop a Positive Behavior Support Plan

If you have a PBS plan in place, it’s a good idea to review it often for checking on updating the plan for behavioral changes and fidelity. Are you following the plan? If you don’t have one in place, it’s an even better idea to put one in place. I have a positive behavior support plan series that helps keep me in check with what I'm suppose to do. Richie’s behavioral challenges change often. Sometimes he goes back to old behaviors and sometimes he creates new patterns of behavior. We’ve also had to continuously adapt our strategies as well, because what may have worked in the past is no longer effective. I still refer to the plan often as it helps our team to review and update Richie’s behavior changes and strategies.

2. Narrate Situations and Expectations

It is a known fact that kids with autism or other developmental disabilities experience heightened anxiety. One of the most frustrating things for kids with autism and developmental disabilities who are non-speaking or have limited speech (like Richie) is not knowing what is going on. We often forget to let them know details of our day and let's face it - often we fear the unknown. Imagine what it must be like during times of change or crisis. They experience feelings of confusion, fear and anxiety. I found that narrating to Richie what to expect is so helpful to him and for avoiding potential problem behavior.

I always let Richie know what’s going on throughout the day (well, I try my best to be conscious of this). If people are coming to visit (whether they are planned or unannounced), if there are routine changes, plans for the day, why someone in Richie's presence is upset or happy, or even if I’m unavailable to give him attention for a while because I have to be on a meeting - I am narrating these things to him as often as I can. It’s important for him to know what’s going on so he doesn’t feel anxious. I might say something like, “Richie, I’m going to be working on the computer from 12 pm to 3 pm. In about three hours, I’ll be able to come and talk and play with you,” or "Richie, we're having a discussion that sounds like Kirk and I are upset, but it's because we heard this on the news." And then I'll proceed to let him know what the news reported.

3. Reinforce Good Behavior

Even with well-crafted behavior plans, often we are so focused on correcting, redirecting, and disciplining challenging behavior that we forget to praise our children for when they are behaving, or completing tasks without challenging behavior – especially if our kids get through moments or tasks where they would have ordinarily engaged in bad behavior. For example, there was a time when Richie would slap his face anytime he had to get up to complete a task (recycle, take out the trash, use the bathroom, etc.). When Richie sat down for a long time without self-slapping for a long time, or did a task without self-slapping I would make sure to acknowledge this with reward and praise he enjoys.

If you are about to talk to your child about their bad behavior, start by praising them for something they did do right that day, week or month. When we approach them with a neutral tone, it usually results with a better understanding of what is expected of them. This took practice for me so don’t feel bad if you need to practice this method too!

4. Get Ahead of the Behavior

If you’ve been able to identify a pattern of behavior, or you know what will trigger undesired behavior, it’s good to prepare for it before hand. For example, Richie developed a pattern of behavior that includes slapping his stomach or leg every time he has to use the bathroom or transition from one room to another. When he asks if he can use the bathroom or get water (he got use to asking even though he doesn’t need to), I tell him to go use the bathroom or get water but to please remember to walk with calm hands. This reminds him of what is expected and helps to decrease the probability of his slapping behavior.

5. Promote Appropriate Communication

When ever possible, try to get your child to either say the words they mean to say or use pictures, sign or what ever method works best for your child or teen to convey their message. Richie typically uses one or two word phrases (he also has a few three word phrases) and he will also point or use gestures to communicate with us.

Once I figure out what Richie is trying to communicate, I try to get him to say the word by repeating me. Instead of asking Richie to "look at me," I get his attention by tapping my chin so he can see my lips mouth and pronounce the word(s) he can repeat. This is much more effective than constantly annoying him with "Richie, look at me!"

When Richie’s point is missed or not getting across to us, he will resort to challenging behavior (self-slapping, hitting the wall, or hitting others). We try hard not to respond to this behavior. I say try because there have been times when I'm stressed or distracted and I instinctively react to his behavior. When I do, the behavior typically increases or gets worse. This gets me back on track with following the steps in our plan. Ignore the behavior – wait a few moments and remind him to use his words or show me what he wants without the junk behavior.

Challenging behavior results from one or more of
four possible reasons:

Access - your child wants an item, to do something or go somewhere.
Attention – your child wants your attention or to be acknowledged.
Sensory – your child is struggling with an emotion, pain, or other sensory issues (need for tactile input, etc.).
Escape/Avoidance – your child wants out of a specific setting, activity, or task, etc.

Understanding why your child or teen is behaving a certain way means you are half way through solving the issue. This helps us to think about strategies that may help to avoid, improve or eliminate behavior.

I wish I could tell you this is an easy process, but it's not. I am still learning every day about how to be the best behavior detective I can be for learning about Richie’s behavior. Then I do my best to follow my plan. I don’t always do it right, but I try hard to follow the plan with fidelity as best as I can.

When Richie’s behavior begins to wear me down, and it has more times than I care to admit, I will take a step away to get myself right again. I’ll leave the room, I’ll walk away to help avoid reacting in a way that will reinforce the bad behavior. What ever you do, go easy on yourself and take one day at a time. If you lose your patience, and you might, take a moment and a deep breath. You can still turn it around by changing and calming your attitude, approach and reaction. Remember that you get to reset every day. Think positive and know in your heart that behaviors will improve and things will get better.

Good luck to you friend, and please feel free to share any successful tips mentioned here or not that have worked for you and your family at home.

April is Autism Awareness Month – Why Awareness is Still Needed

Sun, 19 Apr 2020 23:43:19 GMT

Autism awareness is a topic that is discussed all year ‘round. However, during the month of April, we hype up awareness by sharing and celebrating success stories of individuals and children on the spectrum who are doing and learning things people didn’t think at one time were possible. I have heard people mention that we are inundated with information about Autism and that it’s too much. I’ve also heard others mention that they despise Autism Awareness Month because of their private struggles with autism as a self-advocate and as a parent. I understand why people may feel the way they do, there is no easy path to follow when living a life with autism or caring for a loved one who has it. Still, autism awareness is needed for understanding, for sensitivity, for acceptance and access.

What do the statistics say?

The CDC recently reported that 1 in 54 children are diagnosed with autism. During the 1980’s, an era when the movie Rain Man starring Dustin Hoffman was released (1988), autism prevalence was reported as 4 in 10,000. In the 1990’s, it was 1 in 2500. When my son Richie was born in 2002, the rate then was 1 in 150. Richie wasn’t diagnosed until he was close to three years old, despite my claims that I noticed symptoms and ultimately believed he had autism at 9 months old. Family members and his then pediatrician, didn’t want to give him that diagnosis, a common trend among doctors back then.

Thankfully today, there are new diagnosis criterion and best practices continually being developed and used among pediatricians and physicians for earlier detection. Children as young as six months can be diagnosed using proper protocols. Autism is still only detected by observation only. Awareness is important across the medical field so that the earlier a child or adult is diagnosed, the earlier treatment for undesired symptoms can begin.

Please don’t get it twisted. Treating people with autism is puzzling – not their intelligence .

In the early 1900’s, it was believed that individuals exhibiting autistic behaviors were really signs of having schizophrenia; they were aloof, self-absorbed and seemingly preferred being alone. In 1943, an American psychiatrist named Leo Kanner published his reported findings of 11 patients who were children as highly intelligent, but noted that in order for these children to feel regulated or comfort, they required rigid routines, engaging in repetitive behaviors and had a seemingly desire to be alone. Dr. Kanner later diagnosed those children as having “Early Infantile Autism.”

In 1945, an Austrian pediatrician and professor named Hans Aspergers reported that a group of his patients were highly intelligent but struggled with social interactions and exhibited obsessive and ritualistic behaviors. Hans later named the condition Aspergers Syndrome. These patterns of similar tendencies were a milder form of what Kanner was reporting, but the symptoms were strikingly similar in nature.

You may have noticed that in both reports from Dr. Kanner and Dr. Aspergers, they stated that the patients they studied were highly intelligent. This is important to mention because it’s natural for us to make quick assumptions based on what we see and not what lies beneath the surface. We see non-speaking individuals who are behaving unusually and seem not to have the ability to do the most basic of things, such as self-care, or having a conversation with others. However, what we don't see is what they truly know, understand, and may be able to do.

It’s important to know that individuals with autism can learn and do so much more than we give them credit. Patience, love, and understanding can help them get to living a life of independence and continued learning.

Autism is among the quick rising prevalence of
developmental disabilities today!

People will most likely know someone with autism personally or know of someone who has autism. There are many myths and misconceptions that may cause fear, prejudice, and unnecessary distancing from someone who has autism. This is why awareness is still needed.

You may have noticed that I mentioned that the children in both groups of patients “seemingly desire to be alone.” I don’t believe that anyone truly desires to be alone all the time, that most certainly includes people with autism. Sure, there are moments when we all need space to adjust, adapt and regulate to our surroundings and circumstances from to time. However, no one desires to live a life utterly alone.

We all desire companionship, we all desire to be comforted with affection, or by touch, hugs, and some kind of interaction or connection with others. Children and adults with autism are no different. Their behavior may indicate a need for a break from the current situation, not a permanent place in isolation.

People who have autism play a role in this world and are a part of God’s plan just like the rest of us. It’s up to us to help them to discover their path in life with support, encouragement, love, kindness, and understanding.

St. Jude Children’s Research Hospital Takes the Lead When it Comes to Defeating Childhood Cancer

Tue, 31 Dec 2019 23:26:46 GMT

For years, among the many charities I have supported, St. Jude Children’s Research Hospital is the one I find myself drawn to when it comes to becoming a continuing supporter – and with good reason. Who wouldn’t want to support a cause working to relieve and prolong the lives of children having to deal with the cruel outcomes that come with having to fight aggressive cancers? Join in on St. Jude’s lifesaving mission this Thanks & Giving season by donating with your Domino’s order in-store or online.

St. Jude Children’s Research Hospital® is leading the way the world understands, treats and defeats childhood cancer.

Quite a few years ago during one of my business trips, I had the pleasure of visiting the St. Jude Children’s Research Hospital in Tennessee. It was a humbling and eye-opening experience for me, since I have never known the horror that cancer brings to a family of a child who contracts the cruel disease.

One of the most important things that is incredibly impressive is the level of support families who are fighting for their child’s fight against cancer receives. Families never receive a bill from St. Jude for treatment, travel, housing or food—because all they should worry about is helping their child live. St. Jude makes it possible for them to focus only on their child without the distraction that comes with having to think about financial burdens.

It will cost approximately $1 billion to operate St. Jude this year and the majority of that must come from generous donors. By sharing discoveries and research findings freely with others, St. Jude is inspiring more collaboration and possibilities worldwide and saving more children everywhere.

Treatments invented at St. Jude have helped push the overall childhood cancer survival rate from 20 percent to more than 80 percent since it opened over 50 years ago. And they won’t stop until no child dies from cancer. To me, that’s a mission worth supporting.

How Can You Help Support St. Jude Children’s Research Hospital?

Domino’s has participated in the St. Jude Thanks and Giving campaign since 2004 and has raised more than $57 million in that time. If you love pizza as much as I do, then you’ll know this collaboration is the perfect match for being able to enjoy your favorite food and support a noble mission that supports the fight against childhood cancer! So, what can you expect from this super deal? You can order the St. Jude Meal Deal which includes: 2 Medium 1-Topping Pizzas, 16 Piece Parmesan Bread Bites, Cinnamon Bread Twists, 2-Liter of Coke and a $1 donation to St. Jude for $19.99.

You can support @stjude and their lifesaving mission by donating at checkout on dominos.com or ordering the St. Jude Meal Deal, including a $1 donation to St. Jude. You can also donate online here.

My hope is that you will consider supporting St. Jude Children’s Research Hospital by ordering Domino’s great St. Jude Meal Deal or donating online. Your support will help support children who are fighting their fight of their lives and their families who are supporting them along the way.

Please note that this post was in collaboration with Sway Group in support of St. Jude Children's Research Hospital as a goodwill initiative. I was not compensated for this post.

Best and Fun Gift Ideas for Kids and Teens with Special Needs

Tue, 24 Dec 2019 17:18:54 GMT

There is always a season or reason for gift giving, since after all, there are holidays, birthdays, graduations, and sometimes just random acts of kindness. These special occasions remind us that love, togetherness, and feelings of gratitude and gift giving are always in season.

Many of us give to others in the form of benevolence, such as making donations to causes in honor of someone or volunteering their time. Some people enjoy expressing love and gratitude by cooking great meals and baking delicious treats. Of course, whenever possible, we look forward to buying that special something for loved ones and friends.

When it comes to loved ones or friends with special needs, we might find ourselves at a loss for gift giving ideas. If the person is non-speaking and communication is limited, getting ideas may have to come from mom and dad or their caregivers. But what happens when you get the famous reply, “We will be so grateful with whatever you give her.” For additional ideas, I wrote another post about gift giving here.

But here is a fresh take on some ideas that are fun and high ranking on the rating list of gifts this year!

For the kids who love visual stimulation and creating their own master pieces, here is an eye pleasing gift that will be sure to get smiles. This Magic LED Drawing Board is a great gift for kids of all ages. Its unique illuminating feature brings all artwork to life!

Another cool idea for kids who love creating images of skillful art is this LED Artist Tracing Drawing Table:

Thinking about a practical and affordable gift? Kids and teens of all ages are wearing “no tie sneakers” these days so why not get a pair of “Easy no tie shoelaces?” This gift will bring all sneakers up to speed in style!

What about the gift of knowledge? For kids who love to read or be read to, KidsBooks.com has a fantastic collection of books at unbelievably affordable prices. My son Richie is seventeen and enjoys listening to scientific based facts or historical and geographical information (I buy him the "Weird but True" collection). He learns the information and then waits to be asked open-ended questions that he spells the answer using alphabet stencils.

Another cool gift for avid readers is this unique glowing bookmark that will be sure to win book lovers over! I’m actually thinking about treating myself to this gift on my birthday!

For science lovers of beyond earth’s atmosphere and into the wonder of the solar system, here is a fantastic bracelet that anyone can sport! I think it’s a cool and fun way to learn and remember the planets of our solar system.

This is my favorite tumbler - it goes with me everywhere and is never unnoticed!

This year my daughter Samantha, knowing that I am a Game of Thrones fan, bought me a personalized cup that not only has my name on it – but also has the title “Mother of Dragons!” I love it and I get compliments on it all the time. Getting someone a personalized cup is a thoughtful idea. You can have your cup/tumbler to be designed based on a person’s favorite color(s), occupation, interest, hobby, favorite sports team, or simply a personal message from you.
Samantha also had one made for her brother Richie about sharks because this year that has been his latest main interest!

Rose Gold Custom Dragon Scale Tumbler

For children, teens and adults who need sensory input through vestibular motion, there are a variety of swings that can used indoor or outdoors. An all-time favorite that is used by many indoors is this great snuggle swing for all the sensory input it provides.

Sensory Therapy Swing

When in doubt one can never go wrong with gift cards. Depending on the gift recipients’ interests, you can buy gift cards for pretty much anything these days and they always make someone’s day. I find movie tickets to Sensory Friendly movie theaters are great and fun for the entire family.

I would also suggest checking Groupon for restaurant and attraction deals – you would be surprised of the great deals you can find on Groupon!

It’s important for us to remember that the benevolent act of giving isn’t necessarily about just “getting it right.” It’s about letting others know you care and that you’re thinking about them during holidays, special occasions, celebrations, and throughout the year. Because of this, we have to remind ourselves that there are no “wrong gifts” if we are informed of what’s safe and appropriate for the loved one we’re thinking about.

I hope you found these to be helpful to you when go gift shopping for someone you care about with special needs.

If you have a great idea that you feel should be added – please feel free to comment and share it below.

Disclosure: Please note that there are Affiliate links in this post and I may be compensated if you purchase these items using these links at no additional cost to you.

How to Improve Parenting Our Child’s Digital World

Tue, 12 Nov 2019 13:00:00 GMT

I had the pleasure of sitting next to these two veterans at the dealership where I was getting my car serviced today. They were entertaining as they carried on a conversation about how things were during their time and how sad they view the world today. They recognize that technology is a blessing, but they believe it comes with great cost.

They talked about how in their day, when they outgrew their board games, trucks and other toys (they added that their toys were in no way technologically inspired), they kept their minds going with imagination as they invented new games and toys to play with while outside and getting exercise. They mentioned that they see their grandchildren, who range from ages 4 through 17, and the differences observed in their growth, attitude, manners, respect and learning is profound – and not in a good way. They stated that the children of today are experiencing depression, anxiety, mood disorders, social issues and other learning disabilities that they don’t remember seeing when they were growing up.

The Brain is fully Developed by the Age of 25

It’s true that many disabilities weren’t well identified over thirty years ago, but these gentlemen were not wrong in their observations. During development, the child’s brain is constantly creating new neuro-pathways needed for increasing critical thinking, using their imagination, expanding skill-sets, increasing vocabulary, and improving social interactions.

Today, according to the latest research, the average American child has a smartphone by ten-years-old while in the fourth or fifth grade, but that’s quickly changing. Children in the second grade is quickly becoming the norm for having smartphones, constant access to video games, television, live streamed shows, and other technological devices for hours – sometimes all day long with very limited supervision.

Technology gurus Bill Gates and Steve Jobs had strict rules with regards to their children’s access to digital devices. They didn’t allow their children access to the devices they created or others until they were well into their teens (about fourteen-years-old). If that doesn’t raise a brow for caution, I really don’t know what else could.

Monitoring and Supervising Screen-time and Online activity is an Important part of Today’s Parenting

Among all things that involve parenting our children, monitoring screen time and supervising their online activity has never been more crucial. Whether your child has a disability or not, child development is affected as they are over stimulated by digital access. I limited my son Richie’s use of his iPad to only outings that may be noisy or difficult for him. Richie is seventeen and has autism. I noticed he was getting obsessed with YouTube videos, was becoming angry, violent, and increasingly frustrated over accessing certain videos and scenes. I also noticed he wasn’t interacting with us or learning new things. It took over a year to get him over his addiction to devices, but we are now to the point where he returns the device to me when time is up without any issue.

Wooden Tic Tac Toe Game

As our children develop, it’s important to remember that not all children are able to control their insatiable appetite for playing video games, engaging social media apps (these days most favored social media apps in tweens and teens between ages 10 and 19 are Snapchat, Instagram, YouTube and Twitter).

Of course, as parents we can exercise our own discretion with what is allowed and what isn’t allowed. But if you’re not sure about when the right time for a kid to own a phone might be, here is something to think about:

Does your child need to be able to call or connect with you?
Would your child turn his or her phone off or use the “Do Not Disturb” feature while they’re in the classroom?
Is your child disciplined enough to put the phone down for several hours at a time when not needed?

If the answer to all of these is “no” to any or all of these questions, then your child is not ready to have a phone yet. Good habits develop over time and research is showing that the average child between ages 8 and 18 who has a phone with internet service is watching an average of 7 hours of screen time daily. What does this mean? It means these children are not engaging in enough “face-to-face” time with family, friends, and other social opportunities. They’re not learning how or strengthening their ability to interact, communicate, expand their vocabulary and social skills. It means they’re not exercising their brains for critical thinking, executive function, imagination, research and analyzing, and other important factors for learning. It means they’re brain is growing dependent on visual stimuli and instant gratification. In other words, their brain needs to be spoon fed information and they need everything to happen now.

Signs of Trouble

Research has further shown that the number of children dealing with anxiety, depression, and social isolation has increased over the past decade. There are signs we can pay attention to when our children need to detox from their phones, internet and video games.

Does he need his phone with him at all times?
Does he have notifications on for all social media outlets, check his phone frequently (every few minutes – sometimes seconds) and responds to each notification?
Did she stop doing things she use to enjoy doing?
Does he prefer to stay in his room for hours at a time with the phone (all day if you allow it)?
Is she engaging in social media activity during school hours?
Does he lose his train of thought or forget tasks within seconds of being asked?
Is the phone the first thing she wants when she gets up (sometimes she’ll get up earlier on school days just to access it)?
Does he try to bargain keeping the phone at night (“It’s the weekend mom!”)?
Have mood swings worsened, especially when denied access to devices (heightened tantrums, dramatic scenes, unusual confrontations)?
Your child only seems happy when they have their device.

Please note that it’s also possible that these signs could be indications of something other than screen addiction. As a parent you should trust your instincts and if needed, see about getting your child some help. However, you know your child best, and if it’s more likely that your child is in serious need of screen detox, then it’s time to make some changes.

How to Establish Healthy and Balanced Routines

If after reviewing these signs you realize it’s time for creating healthy boundaries and establishing better routines, you’re not alone. Many of us have had to break our children free from too much screen time and get back into the land of talking to real people. My son has autism and loves his iPad and phone. However, I saw that he was growing increasingly aggressive and what’s worse is he wasn’t interested in doing much of anything else. He wasn’t learning either.

So how much screen time should we consider giving our kids? I say it’s best to establish a daily routine for the weekday and weekend. Create a schedule your child can follow, rely on and knows what is expected of him. Give your child opportunities to earn additional screen time. It’s important to remember that if you set a schedule, create healthy boundaries and rules, that you follow through with consequences as well. If your child breaks a rule or deviates from the schedule, the consequence should be clear and thorough. The moment you don’t follow through with any punishment or consequence, you lose all credibility and that child was just assured that rules don’t really need to be followed.

Of course, as parents we should trust our instincts and may have an idea for how long our children should have screen time, but here are some ideas that might help with creating a routine.

No access to phones or screen time:

At the kitchen table or during meals.
During family gatherings or other visits.
While studying or doing homework.
While doing household chores.
Overnight in their rooms.
At least one hour before bedtime.

Of course, you can create your routine to include that there be no access to phones during family game night or when your child is engaged in sports or other extracurricular activity.

There's an App for That!

Monitoring our child's online interaction is also so important. There are literally hundreds of apps to choose from depending on the kind of control you feel is important. Google Family Links is a great one for setting rules for your child on their mobile device.

The good news we can always develop new learning habits, create healthier routines, and help improve our children’s development. Please share your ideas for creating a healthier balance for screen time with your child. What ideas do you have that worked well in teaching your child to have a healthy balance of screen time in their daily routines?

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and Mommy Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

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I Love my Husband - But He’s Not a Saint for Staying

Tue, 15 Oct 2019 00:45:03 GMT

I know the title sounds a bit absurd – after all – longevity in any marriage is precious - couple that with step-parenting a teen with autism and to some, this might be something of a phenomenon. I just don’t believe it should be that way. I am hurt by the number of times my husband is told he is a saint for staying with me - a special needs mom, and for being a step-dad to my son who is a teen with autism. I think it's important to mention that my husband stays because he is drawn to us by love, not charity.

A vow in marriage is a promise to stay together in sickness and in health, through times of happiness and times of great challenge. A vow is a sacred oath, not a habit you can change for convenience. That being mentioned, please know that I am in no way suggesting that anyone should stay in a marriage involving domestic violence, adulterous or any situation that is unhealthy or dangerous.

This is my second marriage, so I’m aware of what it’s like to break free of unhealthy circumstances. My divorcing Richie's father had nothing to do with him having autism and everything to do with the fact that we just weren't right for each other. We are both remarried and thank God we are in healthy relationships. For now, I’m writing strictly about my current home situation.

Please let me be clear that I think couples who genuinely try to keep their relationships together, men and women alike, should be acknowledged for their devotion to their families. However, I struggle with anyone who is being praised for doing something they should be doing regardless of how challenging things may seem. I understand it's natural for many to compare people who honor their vows and commitment to their family with those who leave because they can’t deal with the many challenges that come with raising a special needs child.

I understand there are many people for which nurturing or caring for others doesn’t come natural to them. They may not have the patience and understanding that is needed for raising special needs children. If they know themselves well enough to admit that they will not commit to loving and caring for special needs children, then it’s right for them not to be involved. They could possibly cause more pain than good to the family. But why would anyone who does have what it takes to nurture and care for someone with special needs want to be measured up against those who don’t?

I know many have told my husband, “I don’t know how you do it, man. I couldn’t do it.” These words are stated by men whom I know are great dads to their own children. They’re good family men, but they don’t realize their words are hurtful and non-supportive. If their child were to have a disability, I know they would not abandon them. They would love and support them, making the very words they tell my husband untrue.

I understand that when we see situations that seem extraordinary and unique to us, we might feel compelled to say something like, “I could never do what you do,” or “How are you still there?” in an effort to offer words of comfort, but are they really words of comfort? It’s a direct insult to the child and biological parent (whether it’s the mother or father).

In my case, it’s me. It makes me feel as though Richie and I aren’t worth it. We don’t measure up to the neuro-typical situation – for which one might say, “Try your best to stick it out, it’s the right thing to do.” Instead, someone might even give my husband the “green light” to leave. After all, this is just too much for anybody. Well, that’s absolute nonsense. Richie is so worth it. We are not just the package deal, we are the daily special.

Today’s world is riddled with unhealthy and toxic relationships and it has nothing to do with having children with special needs. Yes, it’s true that when raising children with special needs there are elements of hardship unknown to families without children with special needs.

However, most of us already know that relationships and marriage is anything but easy.   I know couples in marriages who put on quite a good show in public but can barely say two kind words to each other, some, sadly, include a history of violence. I know couples in marriages who have no shame in disrespecting one another in public. I have been in situations where it seems it's a race between spouses on who can make friends and family feel uncomfortable the quickest.

I know couples in marriages who have forgotten how to be affectionate with one another. They live more as roommates than they do as loving spouses. Sadly, I know couples in marriages who have affairs routinely. For these couples, it's a matter of who can cause one another the most pain. Children living in these unfortunate situations suffer through these circumstances whether they have special needs or not.

Please note that this is not to say that families without special needs children don't have loving relationships and healthy marriages. Of course, they do. I know many couples in healthy and loving marriages who don’t have special needs children. My point is, there is no greener grass on any side, there is no such thing as an “easy marriage.” As a married couple, you do the work, try your very best and you love your family unconditionally.

Kirk and I have a marriage filled with moments of love, anger, laughter, disagreements, affection, frustration, long and short silences, kindness, mean come-backs, respect, and friendship. We’ve had some pretty scary arguments too. Some of them caused tears, some caused the need for a moment away for getting air, some even caused us to question ourselves. But we come together with an understanding that we’re in it for the long haul. Our blended family is a blessing from God that comes with moments of joy and hardship that we can either handle or do our best to handle. We lean in and we don’t give up.

As people we should always try do the right thing. Every day we need to genuinely try to do the right thing. I believe every one of us has a purpose. Sometimes we learn our life purpose early and sometimes it takes a lifetime for some of us to discover our purpose. Children and adults like Richie are far more special than just their needs. In addition to discovering their life purpose, they serve as constant reminders for all of us to be kind to one another. They teach us to take care of those who cannot take care of or defend themselves.

My husband Kirk is a good man for many reasons. But sticking it out with me and my son Richie is not one of them. He is good because he’s sweet, charming, gallant, thoughtful and gentle. Kirk doesn’t view being with us as “the decent thing to do.” Kirk loves us and he’s told me he feels lucky to have Richie in his life.

Have you ever felt that friends and family think your spouse or life partner being with you is an unbelievable thing? Please share your thoughts with us!

Our Family's Experience Using the Person-Centered Planning Process

Wed, 12 Jun 2019 00:00:00 GMT

Not so long ago, I wrote about how my family used the positive behavior process to help manage our son Richie’s challenging behavior. The entire series was about how we were able to overcome and manage Richie’s aggression towards others, self-injurious behavior, and when he became destructive in our home. We were successful using the positive behavior support process and we’re having success using it again! We had a lapse in upholding our original plan with fidelity and as a result, we were experiencing the same behaviors – only this time around it was much worse. We were dealing with the fact that Richie was taller, stronger and now repetitive self-slapping was added to his list of self-injurious behaviors. Richie’s frequent self-slapping is a new behavior that is so difficult to control and change, but it’s something we’re currently working on with a new and improved positive behavior support plan. After teaming up with knowledgeable and experienced behavior analysts and assistants, and using other therapeutic interventions, we were able to get Richie’s aggression under control again. Only this time, we took it a step further. In addition to following our well-crafted positive behavior support plan, we were going to create a Person-Centered Plan.

What is a Person-Centered Plan?

A Person-Centered Plan is a process using a team-based approach for determining future life outcomes together with the focus person. In our case, the focus person is my son Richie. Together our team discussed and developed strategies that will help Richie to achieve those life outcomes.

Key Steps for Preparing for the Person-Centered Planning Meeting Include:

Scheduling a time and place for a group of participants that is convenient and comfortable for about a two-hour meeting.
Inviting anyone who is involved in Richie’s life. Richie’s siblings, his parents (in our family situation he has two family households – Kirk and I and his dad and stepmom). We also invited therapists, members of the IEP team at school, care givers, service providers and anyone who might be able to contribute meaningful information about Richie. For anyone who couldn’t make the meeting, we invited them to provide input by answering a few questions via email that would be shared and discussed during the meeting.
Having markers, paper, tape, large sheets of note paper (25 X 30 would be ideal) and pens available at the meeting.
Having one person record the discussion and another person delegated for facilitating the discussion and writing information on the sheets.
Deciding on a way to maintain contact for sharing information and updates. For us, it was decided we would maintain contact via email.

This is unlike any other planning process I’ve ever experienced. When Richie, Kirk and I arrived at the behavior therapist’s office, the room was designed with our seats lined side-by-side facing large sheets of white paper taped across the wall. The table placed in front of us had different colored markers and pens on it. One by one everyone who was invited began to fill the seats in the room. We all greeted one another and took our seats. Although our group knew each other and there was no need for introductions, I would suggest starting with a brief introduction and have a sign-in sheet that tracks attendees and their relationship to the focus person. This is especially helpful if you have attendees who are not known by everyone at the meeting.

Custom Weighted Blankets

What Content is Required and Discussed at the Person-Centered Planning Meeting:

One of our behavior analysts facilitated and led the discussion by asking questions and offering examples that helped guide us through the process. This was incredibly helpful since most of us attending the meeting had never gone through this process before. She asked us questions and captured our answers on the large notes of paper on the wall. At the same time, another behavior analyst captured all the notes on her note pad for easier transcription of the notes. It’s important to note that Richie remained in the room the entire time we held the meeting. He needed to get up and walk around often and this was perfectly fine with everyone. The facilitator explained the meeting focus and the process to Richie and told him this process is about him and his future success. She also told him he was welcomed to let us know if he agreed or didn’t agree with anything that was discussed. She even handed him a marker and asked him to leave his mark on the white sheet to kick-off the discussion! The facilitator brilliantly kept us engaged, honest, positive, hopeful and excited as she asked the following questions (each large sheet was sectioned with the words in bold):

Future: Where will Richie be in five years (2024)? Where will he be living? What will he be doing? Who will he be spending time with? What is our vision for Richie? It’s important to think and dream big! This was where we all had fun thinking about the things we want Richie to accomplish. For us – our list included:

Communicating Effectively
Calming when frustrated
Holding down a job he likes
Owning his home with living supports – with roommates if he chooses
Being autonomous
Bicycling/Swimming doing fun outdoor activities
Hobbies – Military collection (Richie loves military hats/clothing, etc.)
Having friends with similar interests/girlfriend
Cooking his own food and cleaning his home
Volunteering – beach cleanup (Richie loves the beach)
Navigating Public Transportation
Advocating for himself – voting, safety, etc.

Now: What is currently happening with Richie in relation to this vision? In this part we were able to list the things that Richie is currently doing. It was natural for us to begin with the things we found to be difficult for Richie. Our facilitator reminded us that we were to also think about all the positive things that Richie is doing successfully. We listed:
- Self-slapping frequently
- Communication – limited repeating, using pictures
- Takes a while to process information and movement
- Uses restroom independently
- Recognizes letters (we believe he can read), symbols, and is responsive
- Aggression is more manageable
- Does chores and cooks
- Sleep is much better
- Has a sense of humor
- Follows routines
- Frustrated when pushed
- Healthy

Enroll: Who could we get to help? In this section we list the people in Richie’s life, as well as local agencies and other community resources who can contribute and help Richie to reach his goals. We can enroll:
- Behavior Support Team
- IEP Team
- APD
- Vocational Rehabilitation
- Centers for Independent Living
- Project 10
- Occupational Therapist
- Special Olympics
- Army Surplus
- Siblings
- HUG

Overcome: What challenges will we face? In this step we list the things that serve as barriers to Richie’s success. We listed the following:
- Challenging Behavior (SIB)
- Communication
- Finding Engaging Activities Richie is interested in
- Obtaining Services
- Communication breakdown within the team
- Staff turnover
- Not everyone being on board with the plan (fidelity)
- Lack of social activities
- Frequent changes in intervention

Benchmark: What do we need to achieve to make this dream a reality? We chose a date that was between now and our future goal to list activities and things Richie should be able to do. Our list of goals was set for year 2022 and looked like this:
- Understand Stranger Danger
- Use words or pictures reliably to communicate wants or needs
- Prepare 3 meals for breakfast, lunch or dinner
- Attend social events with peers at least weekly (dates)
- Have no more than one incident of aggression (mild)/week. No more than taps (5x a day)
- Have some social skills – greeting
- Follows instructions and stays on task for 45 minutes
- Identify 2-3 activities he likes and does independently for 1 hour
- Attends special Olympics or other social activities
- Accepts boundaries and sharing items
- Has new chore tasks: cleaning, dishwasher, vacuuming, dusting

Next: Who will need to do what by when to put this plan into place? In this step we chose a date within six months of developing this plan to list the things we believe Richie will be able to do. We will be using the resources we all listed (please note that this plan will change over time, other ideas and resources may be added later).
- Communicate with words/pictures asking for items/saying stop or no
- No more than 1 incident of hard hitting or mild aggression per day
- Attend at least one social event
- Prepare 1 meal for breakfast, lunch and dinner
- Dial 911 and ask for help, interact with an officer appropriately, cross the street safely
- Saying hello or goodbye unprompted
- Remaining on task for 10 minutes (non-preferred activity)
- 1 leisure activity that entertains him for 15 minutes
- Giving up items without challenging behavior

1st: What steps can we take right away? We were told to think about what we could do now to help Richie to reach these goals. What resources did we have access to? Who could we contact to learn more about other resources? This is what we came up with:
- Explore possibility of HUG (Online social activities), Boy-scouts, Special Olympics and other community activities
- Use picture communication board
- Words, gestures, other communication before getting or avoiding anything
- Ignore all junk behavior all the time
- Task analysis and teaching skills listed
- Practice safety skills on all outings (“help”)
- Prompting before greetings/goodbye, practice
- Explore possible leisure activities
- Not doing for Richie what he can do
- Communicate openly as team making decisions together

When we finished with the process, we all sat there and stared at the notes that represented our first Person-Centered Plan. I can’t speak for everyone else, but for me, it was the first time I had felt hopeful about Richie’s future in a really long time.

The facilitator asked us to come up, grab a marker and sign the plan to solidify our commitment to getting each step done. We were then invited to take pictures of our collaborative creation. Our homework was to review the notes when we got home and get to work.

When your child is diagnosed with a disability like autism or other life changing disability, your whole world is turned upside down. Over time, you’ll experience highs and lows throughout your parenting journey that includes reaching milestones, meeting great teachers, therapists and service providers (and not so great ones), but you’ll always be learning. I’ve had days when I felt good about what I was doing for Richie. I’ve also had days when I had no idea if what I was doing was working. I admit that my mind would go blank when I had to think about Richie’s future. Of course, I would acquire services and advocate for him and open up a trust account, have life insurance policies, etc. I want him to be safe and cared for, but I couldn’t picture what Richie’s future would mean to him or our family. I’ve been involved in writing other plans for Richie. The person-centered planning process is the first one that painted a clear picture of what could be my son’s future. It was the first planning process that helped me to actually visualize so many possibilities for Richie. Possibilities that I had forgotten could be his reality. This happens to many of us special needs parents when we’re going through the rough patches that catch us off guard. When we go through those challenging moments of pain and helplessness, we lose sight of hope. Sometimes we question our efforts, our parenting skills, we may even question our faith. I’m thankful for the stellar behavior team we have, the therapists who are passionately working with us, the IEP team who genuinely cares for Richie, our family who has endured unspeakable challenges and still moves forward with love, and God for putting all of these people in our path when we needed them for making all things possible. I am thankful for my son Richie who works harder than all of us to get through each single day.

The Person-Centered Plan is a Unified Quality of Life Plan. I highly recommend you develop one with your loved one and team. It will be your road-map for planning your son or daughter’s goals and achievements, building his or her self-esteem, and keeping them included throughout the entire process because their interests, safety, and dignity will always be the focus. For me, the person-centered planning process gave me a clear vision of Richie being safe, happy and living as independently as possible. It restored my hope and belief in Richie having a successful future.

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Five Strong Issues in the Disability Community that are Still Trending After all These Years

Tue, 12 Mar 2019 12:00:00 GMT

There are many obstacles and issues that have made day-to-day living very challenging for individuals with disabilities for decades. Over the years, we have seen many positive changes, movements, and systems put in place that have improved the lives of individuals with disabilities in many ways. The American’s with Disabilities Act (ADA), the Individuals with Disabilities Education Act (IDEA), 1973 Rehabilitation Act, Section 504, Section 508, Workforce Innovation and Opportunity Act (WIOA) and the Achieving a Better Life Experience Act (ABLE) has improved the lives of millions.

Still, we see many barriers and major issues with regards to policy, civil rights, access and integration. Although, we continue to see strides and continuous efforts in improving the quality of life for individuals with disabilities and their families, of the countless issues any one of us can name, these five issues seem to stand the test of time.

Parent Support

Although there are programs in place for offering advocacy training, guidance with navigating state programs and services, and resource support, the truth is it isn’t enough. For many families, practical support means adequate before and after school care for their child or teen with special needs. Many families are turned away from daycare programs, summer camps, and other off-school programs who don’t have appropriately trained staff or support for caring for special needs children/teens. These families struggle financially and are forced to downsize their homes, give up their careers and in some severe cases, place their child in residential placement. In home supports, such as nurses, respite care, and caregiver assistance who are experienced with health and behavior issues, are needed as well. Especially for the family dealing with urgent healthcare needs or severe behavioral issues (aggression, self-injurious behavior and destruction of property). Families should also be provided counseling by the state as part of their programs for helping parents and caregivers deal and cope with the stressful lives they experience. This type of support could help avoid the possibility of emotional or psychological breakdowns, as well as the need to consider residential placement for loved ones.

Special Education

One of the greatest decisions’ parents make for their child with special needs is placement for educational settings. While I’m a firm believer of meaningful parent involvement and partnership approaches when it comes to academic planning, I know that there are just as many schools that struggle with providing students with disabilities a Free and Appropriate Public Education (FAPE) as there are schools who do a fantastic job with their role in educating children. However, IDEA (Individuals with Disabilities Education Act) continues to get hit annually with financial reductions. The bottom line is schools need more funding and support. Teachers, Aides, Therapists, and all other faculty in special education need increases in pay and support in order to provide a quality education for our kids. Better and continued training is needed so educators can partner better with families when it comes to providing the appropriate support and accommodations needed by the student for achieving academic success. Many states are making changes for improving academic outcomes by changing their curriculum, diploma tracks and accountability systems for making sure students are learning and having the best educational outcome. However, even though graduation rates for students with disabilities continue to increase annually (US Department of Education National Center for Education Statistics reported 65.5% of students with disabilities graduated in year 2015-2016), this student demographic continues to hold the lowest graduation rate.

Elopement

This issue has received quite a bit of media attention lately, but it’s an issue that has stressed parents, caregivers, and educators for many years. Parents of special needs children who tend to wander know what it’s like to have a neighbor knock on the door at 6 am telling you they found your child walking along the middle of the street. While they were sleeping, their child got up and walked out of the house. Many families have invested in door and window chimes, alarm systems with cameras, and heavy-duty dead bolt locks (for which many of these savvy kids figure out anyway). Particularly in the autism community, 46% of children with ASD (Autism Spectrum Disorder) wander and tragically, most drowning casualties are the result of wandering. Funding and support is needed for developing better response systems for schools when a child is first noticed as missing, and programs for teaching children with autism and varying special needs how to swim is crucial. Incidentally, drowning is the leading cause of death for children with autism in Florida. At this time, HB 183 – Student Elopement needs your support to be passed. If you’re interested in supporting this effort, contact the Autism Society of Florida. They need your help reaching out to legislative representatives about this bill that is in the works now and is in need of your support!

Transportation

Despite the landmark laws of the American’s with Disabilities Act (ADA) and the Rehab Acts, there is still significant barriers to the transportation services that are made available for members of the disability community. Transportation provides individuals with disabilities the opportunity to be meaningful participants of their community. It empowers them to become more independent by giving them the ability to travel leisurely, get to their place employment, socialize with family and friends, and connect with their overall surroundings. This is an inherent right of all Americans. However, transportation proves to still be a daunting experience and seemingly impossible public service to access for many individuals with mobility issues and other significant disabilities.

Bridging the Employment Gap

According to the US Department of Labor, employment for individuals with disabilities increased from 18.7 percent in 2017 to 19.1 percent in 2018. And although this is certainly moving in the right direction, it still pales in comparison to individuals without disabilities of whom 65.9 percent were employed in 2018. Statistics reveal that individuals with disabilities are more likely to work part-time than individuals without disabilities. In 2018, individuals with disabilities were heavily employed in service industries (Supermarkets, Fast Food Restaurants, Factories, etc.), performing various entry level tasks – any way to get your foot in the door of your desired industry is a great thing. However, what are we really doing to discover, unlock or support the many talents individuals with disabilities have? Many individuals with disabilities have proven that their talents and abilities may go beyond bagging groceries. They just need help with identifying, building or expanding those skills. In addition to training programs (on disability sensitivity and workplace accommodations) and continued incentives for businesses hiring individuals with disabilities, more programs are needed across the country for identifying skill-sets that can be created, supported, and nurtured.

While there are many efforts being made in creating a more integrated society, we need to look further and deeper into these issues (among so many others), to think about how we can support individuals with disabilities and their families.