eSpecially Ben

How I Make Being a Mom and Volunteer Work at this Group Home

vanessainfanzon@gmail.com (VMI) — Sun, 30 Nov 2025 13:22:00 -0500

In September, Ben celebrated three years living in a group home in Charlotte, North Carolina, with five other men. Ben lives 20 minutes from our house, and we see him several times a week for doctor's appointments, to drop off supplies, for group home events and sometimes because I just miss him. Ben occassionally sleeps over, and he often spends a weekend day hanging out on his favorite couch, watching videos at our house.

This Easterseals PORT Health home is Ben's second placement. The first placement through another agency didn't work out, and he left after six months. We were wary of trying a new place, but it's worked out well.

My husband, Ryan, and I have developed a partnership with ESPH. Over time, we've built mutual respect and trust with the residents and staff.

Here's what's worked for us:

1. Get involved with the group home.

Ben lives with five other men in a six-bedroom house in Charlotte. On move-in day, Steven, one of the residents, made us feel welcome. In his best radio announcer voice, Steven let us know that Ben was now a member of the Ashcraft Team. Because of Steven, Sept. 12, 2022, will forever be ingrained in my memory.

Within the first couple of months, a neighbor suggested we plan a Carolina Panthers Tailgate party at the group home – many of the residents are avid football fans. It was a small event with a few friends bringing snacks and drinks to share with the residents. Over the next several months, I began planning activities for the residents. It blossomed into a monthly calendar with events run by a group of dedicated volunteers.

A key to all of this was the group home manager. She was on board with these activities as long as the residents supported the events we had planned. Since then, we've given two interest surveys so the residents can choose what they like the best. Along the way, we also ask what they like best: Bingo and Pet Therapy are always high on the list.

I never planned to get involved this heavily with the group home. It just happened. The involvement fills several purposes: I stay involved in Ben's life, I provide meaningful activities for the other residents, and I bring community and fellowship to the group home.

I hope I'm giving more than I am receiving, but it may not be the case. I learn a lot from these six men.

2. Stay connected with the staff and manager.

I am a mom to a resident and a volunteer – I keep in close contact with the group home manager because she's in charge of all six men, round the clock staff and everything else she's required to report to ESPH and the state.

My role is to make her job easier – whatever that means. I ask them, 'What does the group home need?' They usually have a list at the ready.

3. Get to know your adult child's housemates.

At 22 years old, Ben is the youngest in the house. The other housemates range from 55 to 70 years old. Sometimes, I am in a rush to drop supplies off or pick up Ben, and I don't have the time for a conversation with the residents.

One time, while I was talking with the group home manager in her office, one of the residents rolled in. The manager's demeanor softened and she moved her attention to the resident. She asked, "Do you want to talk?" I excused myself and the resident moved toward the desk.

That short interaction showed me how important it is for each resident to have his time to talk, share, explain–to be listened to.

I am more intentional when I walk in the house now. What's more important than spending a few moments listening to someone?

4. Observe what's needed at the group home and try to provide it.

Most of the residents at Ben's group home don't have active family members around to provide events and outings. Many family members were heavily involved in the early days, when the house was new, but some family have passed or are unable to provide now.

I believe it's our job to take on where those parents left off. The residents love to share the stories about how their parents got this group home started, how they all met and what good things their mothers did for them. I can't hear those stories too many times.

5. When there's a problem, address it with calm, peace and love.

Of course, there have been problems–the time Ben was pooping out strange material (the diaper he'd eaten), when Ben wouldn't sleep all night, or when he fell in the bathroom. My first response was panic and problem solve–my go-to skills. Again, I've learned to listen, ask questions and see how I can help.

With relationships in place, we know everyone operates from a place of love and kindness.

6. Choose how you will be involved in your child's life.

There are many ways I can be involved in Ben's life. I could choose to just take him out when we want to see him but for some reason, including his housemates (now friends) is normal. Ben still gets time at our house alone with us. But sometimes it feels like our family gained five more members.

"Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges.

Protect Children With Disabilities

vanessainfanzon@gmail.com (VMI) — Thu, 16 Oct 2025 12:12:00 -0400

Dear Senator,

Our 22-year-old son Bennett McCall was born with a rare genetic disorder. He’s nonverbal and uses a wheelchair to get around. He also loves to swim (he can walk in the water), roll along greenways and meet up with friends. He started early intervention at 6 months old and continued through the public school system until he was 19 years old.

Ben is a product of the special education program. I am deeply concerned about the Administration’s decision to fire nearly all staff in the Office of Special Education Programs (OSEP) at the US Department of Education.

For 50 years, the Individuals with Disabilities Education Act (IDEA) has had strong bipartisan support, and we are counting on Congress to ensure these firings are reversed. If not, this will have a devastating impact on babies, toddlers and all children with disabilities.

The staff in OSEP are the people who ensure states follow IDEA, the law that guarantees children with disabilities the right to a free appropriate education and supports states to better serve children with disabilities and their families.

Without OSEP, there will be no federal oversight, no accountability, and no one to make sure that states uphold the rights of children with disabilities and support their efforts to do so.

Before IDEA became law in 1975, over a million children with disabilities were prohibited by states from going to school.

Please take immediate action to stop these firings and reinstate the staff who protect the educational rights of children with disabilities.

Sincerely,
Vanessa Infanzon
Charlotte, North Carolina

This statement is adapted from the National Down Syndrome Congress. Feel free to copy and paste and personalize the top section to reflect your lived experience.

Easterseals PORT Health Group Home

vanessainfanzon@gmail.com (VMI) — Thu, 5 Dec 2024 12:16:00 -0500

Ben is thriving in his group home in Charlotte. I wrote about what he's been up to in this story in Southpark Magazine: Givers: All together

Happy Holidays!

Photo Credit Grant Baldwin Photography

Kids Who Volunteer

vanessainfanzon@gmail.com (VMI) — Mon, 18 Dec 2023 08:00:00 -0500

On Saturday, Kidz That Care, a nonprofit organization in Charlotte, visited Ben's Easterseals UCP group home to "Pack the Pantry" with groceries and beautify the front porch with flowers. Ben joined the group outside and watched them plant poinsettias, sweep leaves and wipe down tables.

I wasn't sure how engaged Ben was in the activity but when I tried to take him for a walk, he made it clear he wanted to stay and observe. He hugged the one adult with the group (not the photo above).

When the group was leaving, Kidz That Care asked to take a photo with Ben. I noticed how Liam, one of the teen volunteers, kneeled next to Ben rather than stand behind him. Usually people not comfortable around Ben are hesitant to get close. I was impressed with Liam's willingness to bend down and be at his level.

Then Ben leaned in for a hug and held on to Liam for several minutes. Ben's hands were tight around Liam's neck and he kept his head on Liam's shoulder. It was a remarkable moment.

Kidz That Care planted several poinsettias in a strip of dirt in front of the porch.

Ben gave all the volunteers fist bumps or high fives when they first arrived.

Kidz That Care also brought groceries to "Pack the Pantry" at the group home.

Group photo turned into a hug fest.

I was introduced to Kidz That Care a few years ago when I was assigned a story to write about the organization. The story is here.

I am truly thankful Kidz That Care is interested in working with Ben's group home. More importantly, the friendships formed will last a lifetime – Ben made that point clear today.

Introducing a Puppy to Ben

vanessainfanzon@gmail.com (VMI) — Wed, 13 Dec 2023 07:00:00 -0500

On September 27 of this year, we introduced Ben to our new puppy, Bailey. The pup was just two months old and on her second day with us. I wanted Bailey to know Ben from the start – get used to Ben's wheelchair, loud vocalizations and rough touch.

We started out slow, with just a few minutes of interaction and then a break. We encouraged Ben to use an open hand to pet Bailey. We were careful not to let Ben grab her too tight. We did this as often as we could, each time giving the two a break and then bringing them together again. The process has worked: The two are friends.

Now Ben reaches out to Bailey to let her lick his hand. I've seen him be gentle with Bailey without prompting from us, letting her lick his fingers. Ben has grabbed her fur and legs a few times, and Bailey has let out a yelp to let him know this is not acceptable behavior.

We've learned some lessons along the way: Ryan was getting choked by Ben on this ride to the greenway. Ben wanted to reach Bailey by any means necessary. We now seat Ben on the opposite side of the car when Bailey is with us.

I've noticed how Ben waves Bailey over with his hand when he wants puppy time. He lets her lick his face and nibble on his feet. Almost three months later Bailey and Ben seek each other out.

Diving Deep into Rett Syndrome in Males

vanessainfanzon@gmail.com (VMI) — Tue, 12 Dec 2023 07:00:00 -0500

UPDATE: About two months after writing this post, we visited a genetic center in South Carolina and received a true diagnosis for Ben. He has a rare genetic disorder called POLR2A.

Ben also has the MECP2 anomaly, connected to Rett Syndrome, but when I was tested, I tested positive as well as one of Ben's brothers. It was determined that this genetic change was not the root cause of Ben's disability.

- - -

In 2012, after conducting a blood test on Ben, GeneDx reported that he tested positive for a mutation on the MECP2 gene on the X chromosome. The summary also said the information was inconclusive for Rett Syndrome. I didn't have the mental capacity to find out what all of it meant. I realize now, that even if I had, I wouldn't have found much of anything about Rett Syndrome in males. The research didn't exist yet. It has since blown up.

About a year ago, I researched Rett Syndrome in males and reached out to a few doctors conducting successful clinical studies on mice. They returned my emails immediately and added Ben to a list. I forgot about it for another year.

Two weeks ago, I looked up Rett again. I found much more information, including a new drug, DayBue. It was approved by the FDA and released in March 2023. I emailed a different set of doctors and they connected me to experts in the field of Rett, clinical studies and family resources.

I discovered a few Facebook groups run by families with children with Rett. I've connected with one mom who lives minutes away. Since Ben has never had a definite diagnosis, I didn't have a community to join. It's strange and liberating to have other families who can relate to Ben's condition. We'd always joked that Ben had his own special diagnosis.

I am proceeding slowly as we gather information and learn about Rett Syndrome. We still need to be sure Ben has Rett Syndrome based on genetics and markers. Once we discuss the pros and cons, we could try DayBue with Ben.

Ben meets with a Rett Syndrome expert at the Greenwood Genetic Center next month. I also sent in a DNA sample to the clinic to see if I am a carrier for the MECP2 mutation. Most likely I am not, and the mutation happened de novo, meaning, it just happened and was not inherited.

I've added Ben to a registry in a Diagnostic Experience of Male Rett Syndrome study at the University of Colorado and offered his medical records for a natural history study through the Rett Syndrome Research Trust.

As we move forward, I will keep you updated on our progress.

Here are two resources I've found:

International Rett Syndrome Foundation

Rett Syndrome Research Trust

If you want to go deep into the literature, here are two articles to get you started:

Rett Syndrome in Males: A Case Report and Review of Literature

The array of clinical phenotypes of males with mutations in Methyl-CpG binding protein 2

Photo: Ben laying in his favorite spot on the couch watching "Bob the Builder" with our new puppy, Bailey.

Adaptive Ski Week at Beech Mountain Resort

vanessainfanzon@gmail.com (VMI) — Mon, 11 Dec 2023 07:00:00 -0500

My winter story in Upstate Lake Living Magazine features four towns in Western North Carolina with ski and winter activities. Although Ben is not one for cold-weather sports, I did find it interesting that Beech Mountain Resort offers Adaptive Ski Week in January.

Read the story below.

Charlotte Group Home's TV Debut

vanessainfanzon@gmail.com (VMI) — Sun, 10 Dec 2023 12:58:00 -0500

WSOC-TV's reporter Elsa Gillis contacted me this summer about featuring the activities we've been planning at Ben's Easterseals UCP group home in Charlotte in the new series Carolina Strong. She'd heard about the events from a local public relations professional who follows me on Facebook.

Here's the clip: Carolina Strong: Local mother spreads joy at home for people with disabilities

The feature on WSOC has brought much-needed attention to group home living: A local school is providing a front porch makeover in the coming months. A grant is supplying the materials for our activities and other neighbors and friends have reached out about volunteering at events.

Photo: WSOC-TV visited Ben's Easterseals group home on Oct. 10, 2023.

Celebrating the One Year Anniversary of Living in an Easterseals Group Home

vanessainfanzon@gmail.com (VMI) — Tue, 12 Sep 2023 08:34:00 -0400

An art project we did at Ben's group home this summer.

Ben moved into an Easterseals group home on September 12, 2022. Today, we celebrate one year with him not just living there, but thriving. Ben's formed friendships with his housemates and the staff who work there.

The move to this Easterseals group home was his second time moving out of our house. In 2021, Ben moved to Greensboro, 90 minutes from our home in Charlotte, North Carolina. He'd been living in an AFL - alternative family living - situation through a different agency. It didn't work out. For more details, read here.

The day program has a living room for activities and relaxing.

Ben moved home for six months while we searched for another living situation for him. During this time, we found an incredible day program. I happened to see a post on Facebook with photos of happy individuals involved in all sorts of community activities. I connected with the staff, and Ben started in June 2022.

Swimming at the YMCA

We made the decision to take Ben out of high school and let him continue full-time at the day program. We've been thrilled with the decision. Ben rides the Special Transportation Bus, a program through the City of Charlotte, to and from the day program. He's out in the community most days: bowling alley, library, museums, parks, pools, recreation centers, shopping trips and much more.

Ben's room at the group home.

In May 2022, we heard there may be space in an Easterseals group home. It still took four months to work out the details. Various challenges had to be worked out, and it was not without stress. But Ben is in the right place. He has his own room in a six-bedroom home in a beautiful neighborhood in Charlotte. He's 20 minutes from our house, and we see him many times a week.

The best part about Ben's living situation is his housemates – five men who have welcomed him into their home. They have a tight community, and the guys look out for Ben. They all know the theme song to Bob the Builder. He's got nicknames like Benny Wenny and Sound Recording Studio (a nod to the loud noises Ben makes). Ben likes to hang out in the living room so he can see his buddies. They've introduced him to a few new shows too.

Ben likes to relax in his Chill Chair in his room.

Ryan and I see Ben regularly – there are no restrictions on when and how often we visit. We feel welcomed by the staff every time we stop by. The staff and certain residents give us a report on how Ben has been doing and what new antics he's tried with them. The staff love these guys and treat them with respect and kindness.

We made tie-dyed t-shirts with the guys.

Easterseals has supported us in planning activities for the residents. I'm a former activities director at a college and now I have a captive audience for art, games and other fun events. So far, the guys seem to love it. Our family, friends and neighbors come out to help us play bocce ball and corn hole and make tie-dye t-shirts and other art projects. At the last event, we had 14 volunteers – enough people to help with the activities and give attention to each resident.

The year hasn't been without problems or stress, but we've worked together with Easterseals and the day program to find solutions. Ben has a strong team of people who love and support him.

How to Find Disability Resources for Your Child

vanessainfanzon@gmail.com (VMI) — Wed, 2 Aug 2023 10:34:00 -0400

Walking in the neighborhood

When it comes to locating resources for Ben, it's taken patience, time and energy. I've had the support of my husband, Ryan, and family to do the administrative work it takes to find resources for a person with disabilities. I'm fortunate to be able to have the time to hunt down resources for Ben – and I also enjoy it.

I talk with families often, and I've seen a pattern in the ones who have a difficult time gathering information and resources. They come to me frustrated, disenchanted and sometimes with the wrong information.

Here are my suggestions for finding resources and using them to best serve your child:

1. Ask the right people for assistance.

Lately, I've been talking with parents who can't find information about certain topics. When they tell me who they've asked, it's the incorrect person. The parents are frustrated because they thought the person should know the answer.

If you ask a doctor about community services for your child, it's not likely they will be connected to what's available. Unless they are personally invested in the special needs community, doctors won't have direct knowledge about what services are offered by the state or county.

Everyone's job is specialized these days. Each person has a slice of the information and it's up to you to access it. Not fair - yup! Annoying - definitely!

As a parent or family member with a child with disabilities, you've got to become a sleuth or investigative reporter. Google keywords to begin the search. Start with a local or national nonprofit organization that may have information about disabilities. Call and ask for the name of someone who will speak to you. Then continue on your quest.

It's time-consuming, energy-sucking and often disappointing. But when you do get to the right people and they are ready to help you, it will be worth it.

Chilling in the group home's living room

2. Set expectations based on new information.

My mom shared the story, "Welcome to Holland," by Emily Perl Kingsley when Ben was first diagnosed with a disability in 2004. It's about someone traveling to Italy, with all the expectations and excitement that go along with such a trip, but they arrive in Holland instead. Still a beautiful place, just not what they knew. If you're not familiar with the story, I recommend reading it.

3. Make decisions with all the information.

Be sure you have all the data before moving forward with a change or major decision. Double-check your sources and get any guidelines or policies in writing.

Separate fact from hearsay: When we learn about some service through a nonconfirmed source, it's smart to check it out firsthand. Make the call, send the email and check the website. False information can set you and your child back.

Evaluate the emotional issues and the practical plans that are in motion. After weighing the pros and cons, we made the decision to take Ben out of high school before he was 22 years old, the legal age he can stay in high school under IDEA.

I loved Ben's teacher and wasn't quite ready to let school go. I was sad he wouldn't see those classmates any longer. My reasons were more emotional than practical.

The real facts were I was getting him up at 5:30 a.m. every morning to get on the bus at 6 a.m. – the schedule was grueling. School holidays and teacher workdays were tough to get caregiver coverage. We love the day program because he has a one-on-one caregiver, is out in the community almost every day, and they have Ben on a successful toileting schedule.

After more research, we found out that if the day program didn't work out, Ben could return to school, as long as he wasn't 22 years old yet. Ben's been at the day program for over a year now.

4. Stay in the present and plan for the future.

Look for resources your child needs now but keep the next five years in mind. What do you want for your child? What do they want for themself? What's available to help your child create their own sense of accomplishment and success?

The same skills we've used to help our middle son get to college are the same ones we've used to get Ben into a day program and group home. Different goals and levels of support but both are thriving on their individual paths.

5. Join support groups and online communities.

I've found support through Facebook groups and random people I've met in the waiting room of a doctor's office. I can ask and answer questions, share my own stories and read about other experiences. It's a great way to connect in a positive environment to people who understand some of what you're going through.

6. Keep notes in one place.

First – take notes, write everything down, or record it (see note below). You will not remember everything that was said in a meeting or on a fact-finding mission.

When you make calls, send emails or collect business cards, keep everything in one place. Start a notebook and tape business cards inside.

Document calls and conversations: Who did you speak to, when did you speak and what's the plan for moving forward? Always get a phone number and email address for each person. Make a plan for follow-up.

Create a folder within your email for any email related to your child. If you record a conversation – check the laws in your state for recording conversations. A recorded Zoom meeting proved valuable last year with an important issue.

After any meeting, send a follow-up email thanking everyone and reviewing what was discussed and who is responsible for the next steps.

Ben with his youngest brother Sean

7. Follow-up.

Your voicemails and emails will get lost, forgotten and skipped. Call again, resend an email or try another person.

Set up Boomerang on your email account – it will remind you to follow up with someone who did not respond to an email.

Always follow-up. It's not personal if someone doesn't get back to you. Everyone is busy and forgets. Remind them politely about the conversation and then ask again.

6 Must-Visit North Carolina Beaches That Are Wheelchair-Accessible

vanessainfanzon@gmail.com (VMI) — Mon, 31 Jul 2023 08:29:00 -0400

Carolina Beach, NC

This story I wrote for Cardinal & Pine, a news outlet in North Carolina, gives us a starting point for Ben's Beach Bucket List:

6 Must-Visit North Carolina Beaches That Are Wheelchair-Accessible

How to Plan a Beach Vacation for Wheelchair Users

vanessainfanzon@gmail.com (VMI) — Fri, 28 Jul 2023 20:42:00 -0400

Coastal communities are helping people with disabilities navigate a beach vacation through ramped and paved walkways, accessible hotels and mobility mats. And beach wheelchairs make it possible for wheelchair users to enjoy the sand and ocean.

Carolina Beach, North Carolina

Ben was just weeks old when he first experienced the beach. When he was old enough, he spent time in the ocean and sand. He fell in love with the sounds, the excitement of each wave hitting his body and the grit of sand in his mouth.

For the past few years, Ryan and I have been taking Ben on his own vacation, a Beach Birthday. The getaway is all about Ben – what he wants to do, eat and see. Our other sons don't come along on purpose because we want to focus our energy on Ben. (As we get older, we may need the other boys for their strength.)

The first time we planned a Beach Birthday, I scheduled two nights in Beaufort, South Carolina at a Hilton Garden Inn. The hotel was great – walkable to local eateries with a two-room handicap suite. It was also 30 minutes from the beach. The beach wheelchairs were free; first come, first serve; in rough shape, and we could only use them to get Ben on and off the beach. We wore ourselves out.

Hotel beds are an attraction for Ben – the first night. By the second night, he's feeling too comfortable in the room and wants to explore. We left that weekend wiped out.

The next year, we took Ben for one night to the same hotel in Beaufort. Although we knew what to expect, the beach wheelchairs hadn't improved and the one time we went to the beach, Ben only lasted in the ocean for five minutes. He had a blast...for five minutes. All that work for such a short time.

Hampton Inn & Suites Oceanfront Carolina Beach

This year, we tried Carolina Beach in North Carolina. I'd stayed in the Hampton Inn & Suites Oceanfront in the winter and saw how close the beach, boardwalk and restaurants were to the property. Walkways are paved, and the boardwalk has several ramps leading to the beach.

Carolina Beach Boardwalk

Mobility mats – plastic or hard surface walkways from the ramp through the sand that brings wheelchair users closer to the ocean – are set out seasonally. The Carolina Beach area also has more than a dozen beach wheelchairs available through rental and loaner programs. We reserved one ahead of time for two days and were able to keep Ben seated in it while he was on the beach. It saved our backs and kept him safely buckled in the chair while enjoying the ocean.

This time, Ben made it to the beach twice: 30 minutes on the first day and six minutes on the second morning. He made it clear when he was ready to leave. There was no lounging on the beach or taking in the view: All business with Ben.

Fort Fisher in Kure, North Carolina

We did visit Fort Fisher in Kure Beach on the way home. The paved walkways and boardwalks through the marsh were a beautiful way to end our 24 hours at the coast.

Michael's Seafood in Carolina Beach – before Ben lost all patience.

Each year, we learn something for the next time and I take notes to remind myself what to do differently. This made it on the list: No eating in a restaurant with Ben. If he's not trying to tip over the table, his impatience comes out in other loud behaviors. Next year, we will focus on ordering take-out and eating it in the hotel.

Everyone's situation is different, and you will know what works best for your family.

Here are a few tips I've learned which may help you plan your beach vacation.

1. Locate a beach wheelchair. As accessible travel becomes more important to destinations, amenities such as beach wheelchairs are being made available to tourists for free or a fee. Check with hotels, recreation centers, state parks and fire departments to see if they have beach wheelchairs. More companies are renting beach wheelchairs and providing drop-off and pick-up services.

Beach wheelchairs come in many shapes and sizes but most have large inflatable tires that roll easily on sand. They’re not too easy to maneuver on any surface but they get the job done on the beach.

Not all beach wheelchairs are created equal. Some are made from PVC pipe and have four wheels, while others are aluminum with three wheels. Find out how low the chair is from the ground. If you can ask for details about the style of the chair, it can help determine if it will work for your situation.

I recommend bringing your own lap belt for a borrowed or rented beach wheelchair, depending on the user’s situation. We made a belt years ago with a locking plastic buckle from materials bought at a local hardware store.

Like newbies, we relied on the one belt fastened to the beach wheelchair. Ben wiggled out of the chair and into the ocean – we don't call him Houdini for nothing. It took all our energy to lift him back into the chair. After we learned our lesson, we added the extra belt, and it kept him secure.

Ben also wore a personal flotation device the first day, and it saved the day when he willfully slid out of the chair.

Ask how long you can borrow the wheelchair. Some places with a limited amount of chairs only allow you to use the chair to get down to the beach and then return it until you need to get back to your vehicle. Ideally, you want to have the chair for a longer time and not worry about bringing it back and forth.

Ben's chair is always positioned where the ocean meets the sand. Beach wheelchairs aren't meant to take you into the water.

2. Find towns with mobility mats and ramps to the beach. Navigating steps with a wheelchair is never safe and adding sand to the mix doesn’t make it any better. Ramps provide a smooth transition to the beach. Mobility mats also help get wheelchair users closer to the ocean and also show a commitment to accessibility by the park or town.

3. Look for accommodations with the amenities you need. Spas and rooftop bars are wonderful but details such as room size, shower style (roll-in or tub), refrigerator (enough room for medications and drinks) and distance from the beach are more important to the success of the getaway.

Other questions to ask: Does the hotel have a pool that may be accessed by someone in a wheelchair? How far is the hotel from the beach? What restaurants are nearby or provide delivery to the hotel? Does the hotel provide breakfast? Does the bathroom have a roll-in shower (double-check this if you require a roll-in)? Is there room to maneuver a wheelchair in the bathroom, in the room, to get into the bed?

4. Ask about accessible attractions in the area. When you’re not in the water or at the pool, exploring the local historic sites, museums, parks and greenways leads to new adventures.

5. Feel welcomed by the community. Six people offered us assistance in some meaningful way while we were in Carolina Beach. It felt good to be seen.

Cities and towns making a commitment to accessibility are not just making it easy for tourists with different abilities to visit but they're also raising awareness in the community. Find a destination where you feel comfortable being who you are and enjoying what you like. For the time you're there, you want to be part of the local community.

A Path for Everyone

vanessainfanzon@gmail.com (VMI) — Wed, 19 Apr 2023 00:00:00 -0400

Ben pet several dogs on this Charlotte greenway. It really made him happy.

Ben and Grandma on the Charlotte greenway.

2023 is North Carolina's Year of the Trail. I cover several accessible trails in this story in Carolina Country magazine: A Path for Everyone

Unlimited Possibilities

vanessainfanzon@gmail.com (VMI) — Tue, 18 Apr 2023 13:55:00 -0400

My first personal essay was published in Our State this month. I talk about Ben's adventurous spirit in Unlimited Possibilities.

Impromptu Pet Therapy

vanessainfanzon@gmail.com (VMI) — Wed, 29 Jun 2022 12:19:00 -0400

Ben met Doodle today. One of the staff at his day program brought him in. Ben loves dogs and these photos made my day.

A Grandma's Perspective: Child with 5p- Brings Out the Best in Family

vanessainfanzon@gmail.com (VMI) — Mon, 6 Jun 2022 08:33:00 -0400

Marjorie and her grandson, Graham

Guest post by Marjorie Frick

My name is Gee or Grammy depending on which grandchild you ask. I have been blessed to raise two daughters and have five grandchildren, four boys and a girl, all under the age of six. Our oldest grandchild, Graham, was born with a rare genetic disorder called Cri du Chat or 5p-. It is a deletion on the p arm of the fifth chromosome.

During the first few months of Graham’s life, we began to pick up on small clues that there might be something amiss. My daughter fought to be referred to specialists and to get some therapies started. Graham was missing some milestones. Two of the biggest issues were feeding difficulties and sleep. After receiving genetic counseling, we finally got a diagnosis at about seven months old. This was one of the worst days of my life.

It helped me see that one of my most important roles in being a grandparent to Graham was to be a parent to my daughter. Graham was receiving the care he needed from his other grandmother and aunts. I focused on caring for Christina. She was already suffering from postpartum depression and, finally knowing, shook her and her husband. It is devastating to see the hopes and dreams that you have for your child be pulled out from under you in three small words. I wanted to show her how strong she is. She is everything Graham needs and more.

One of the toughest days was when Christina called me at work asking how fast I could get to her house. I don’t think I’ve ever moved so fast. When I arrived, Christina was sitting on the front steps. She just needed to cry and be held. Another day, she was having trouble getting Graham to take a nap. She had rocked and bounced as long as she could and was exhausted. I went in and rocked and sang to him. He was asleep in a few minutes. Graham could sense his momma’s stress. Christina and her husband, Brandon, asked my husband, Tim, and me to move in with them at about nine months. We stayed with them for about a year and a half.

We refuse to listen to what the experts say about Cri du Chat. It is all negative and very scary. We want to allow Graham to show us what he can do. He is determined, resilient, and loving. I love his kisses and cuddles. His giggle is infectious. His younger brother and baby sister adore him.

My husband is tremendous and completely devoted to his family. Before Graham started school at the age of three, Tim would keep him on his days off so mom and dad could continue to work. Tim does what he calls PT, Pop Therapy and works with Graham to help build his strength, confidence and abilities. He attended actual physical therapy, occupational therapy, and feeding therapies to learn about supporting him. Now, he picks up Graham from school twice a week. His other grandmother picks him up two days a week. We work together as a family to make sure Graham gets the care he needs.

Graham is now six years old and is able to have table foods. He takes a few independent steps when he wants. He is mobile by walking on his knees. He is vocal but does not talk. We pray that all of this will continue to improve. We have learned to celebrate each accomplishment and say that Graham is crushing “inchstones.”

Our family are all advocates for Graham. We host a 5k for 5p- each year. He has a beautiful community called Graham’s Gang who support him and his family. Graham was able to bowl with a special needs league and is playing baseball with the Miracle League. I try to attend every event. We work hard to make Graham’s life as typical as possible.

Beyond Graham, I have learned that one of my roles is to make sure the siblings and cousins feel special too. We love having them spend the night. We give them all one on one attention and they are pretty spoiled. Tim and I babysit for both families as often as we can so the parents get mom and dad time.

I hope that I have conveyed that being a grandma is multifaceted. I know that my role will change in the future. To other grandparents, find your place in your grandchild’s life. I met a grandma on Saturday who is the sole caregiver. We each have a part to play and we need to adapt as we move through the years. I started out needing to parent the parent. While this will never end, now I get the joy of focusing on being a grandma.

Parenting an Adult Child with Disabilities

vanessainfanzon@gmail.com (VMI) — Fri, 3 Jun 2022 11:56:00 -0400

Throwback Thursday: Sleepless in the Carolinas

vanessainfanzon@gmail.com (VMI) — Thu, 2 Jun 2022 13:03:00 -0400

This was first published in 2013 and unfortunately, we're having some of the same behaviors again. Ben's been waking at 2 a.m., not knowing exactly what he wants and where he wants to be. On some of the worst nights, he moves from his bed to the couch to the refrigerator, then to his favorite armchair and back to his bed again.

This takes at least an hour and I am following behind him as he makes his way. It would be unsafe to leave him to his own devices in the middle of the night.

Since this post in 2013, we have charted Ben's sleep, daily routines and behaviors. We've noted that he wakes 10-15 times a night each month. It doesn't seem related to how much activity he's had during the day or what food he's eaten.

Many families with a child with a disability face sleep issues. Sleeping pills, essential oils, solid bed routines and begging our child to sleep don't seem to work all the time. If you see us walking around, looking like zombies, this could be the reason why. Just side step us so we don't bite off your head.

2013 Post:

Not sure if my itchy Zombie head or Ben's screeching kept me up most of the night following Halloween. I took a shower at 4am to relieve the itching (Note to myself: Shower after a Zombie night) and when I came out, Ben seemed quieter. I did not dare hope he was asleep, but at least quiet for a bit.

For many years now, Ben wakes anywhere between midnight and 3am and does not go back to sleep no matter what we try. His prescribed sleeping pill and melatonin have absolutely no effect on him on these nights. Even if we increase the dosage based on doctor's recommendations, Ben is unable to sleep.

I have not charted it, but my best estimate is that it happens about once a month to every six weeks. It could last two or three nights in a row.

It does not seem to be affected by what Ben eats, change in routine or amount of physical activity. All in all, it does not influence his behavior or abilities the next day either. After a night of no sleep, I have had the teacher tell me he has had a great day, and sometimes she has said, he has had his best day yet. Certainly, he does not take after his parents in this area.

Ben's behavior during this wakeful time is happy and active; he may crawl around the house or he may stay in his bed and watch a video. If he is feeling mischievous, he will crawl into bed with Logan. No matter what, he is loud. When he watches a Bob the Builder video, his laughter is almost maniacal. He cackles like he is having the time of his life.

When I am not corralling him to his bed, making a smoothie or changing a pull-up or video, I try to catch short naps. His jolts of laughter in a very quiet dark house are enough to wake the dead, but fortunately, brothers and Dad usually sleep through it all.

We are not sure what this sleeplessness is caused by - seizure activity is my best guess. It would be almost impossible to schedule an overnight EEG during one of these times unless we were certain of a pattern. I did write in my calendar the date and times he was awake this last time. Perhaps if these bursts of energy are caused by seizures, then additional medication could be given to him on these nights.

A solution to this would be wonderful because after two or three nights of this, I don't just play a Zombie on Halloween, I become one of the walking dead for real.

Parenting an Adult Child with Disabilities: Reaching for Independence

vanessainfanzon@gmail.com (VMI) — Mon, 30 May 2022 08:19:00 -0400

In 2012, the editor of Charlotte Parent asked me to write a short story about Ben for the magazine's April issue. "A Goal of Independence" was my first published piece and the beginning of my career as a professional writer.

When I wrote the story, Ben was 8-years-old. At the time, I recognized how important it was for us to assist Ben in becoming independent. As a mom, it's hard to let go and easy to just do the task for them. I shared an example in the Charlotte Parent story: Ben's brothers scolded me for feeding Ben, rather than letting him feed himself

Ben is almost 19-years-old. He’s lived 90 miles away from us for six months in an alternate family living situation. Although we visited him two to three times a month, I didn't notice how much he matured until we brought him home in mid-March.

He's calmer, more alert and attentive. We've been able to decrease behavior and sleep medications significantly. We'd tried this in 2020 with disastrous results.

His teachers notice how he pays attention in class, something he didn’t do in previous years.

Ben listens to what we say, reacting appropriately. He poses for photos and enjoys seeing the results on the screen.

The changes in Ben have caused me to reflect on the timelines and boundaries we associate with independence.

Here are a few thoughts on independence:

1. It's not one-size-fits-all.

For kids, neuro-typical or not, independence doesn't always come the day after high school graduation, on a specific birthday or when you earn your driver's license. It may come in small bursts or it might be a slow roll. Every person is different.

2. Gaining independence is an ongoing skill.

At every age, we're working on independence. It may come in different forms: Going on vacation alone, starting a new career or dating for the first time after 30 years. Isn't developing independence a life goal? It keeps our minds and bodies active and engaged.

3. Reintroduce experiences and skill-building activities.

Just because something didn't work at one point, doesn't mean it might not work later. Your child couldn't handle sleepaway camp at 9, but maybe at 12, it's time to try it again.

I'm considering adding speech-language pathology (speech therapy) to Ben's schedule again. During his early teens, his short attention span affected his ability to use a communication device. It might be time to try it again with a therapist who specializes in assistive technology and sign language.

4. Notice independence in all its forms.

When Ben wakes in the middle of the night, it's often because he's thirsty. Since he's been home, I've placed a covered plastic cup filled with water in between his pillow and headboard. Most nights I show it to him and help him drink from it.

One morning, I saw him drinking the water. He looked like a hamster drinking from a water bottle, as he strained his neck and head to position himself in front of the straw.

Some mornings, the cup is on the ground empty – no water anywhere, and other times, there's a puddle of water on the floor. Only a recording device could tell us the real story.

From the Vault: 6 Tips for Smoother IEP Meetings

vanessainfanzon@gmail.com (VMI) — Wed, 25 May 2022 07:17:00 -0400

If you’re a parent of a child in school and that child has a special need, you have experienced the IEP – Individual Education Plan - meeting. Endless information about IEP documents and meetings can be found at conferences and in magazines, books and websites. Unfortunately, there are many horror stories about IEPs. Anxiety, fear and dread would probably be on most people’s list of how they feel about the meeting.

I don’t dread IEP meetings anymore. I believe they can lead to creating successful goals for your child and the meetings can be done with little stress and anxiety.

Here are six suggestions based on what I’ve learned from researching and participating in IEP meetings for the past 16 years:

Treat them to food. Donuts, muffins, cookies and juice and/or coffee make friends. Food puts everyone in a good mood, and it makes the atmosphere less tense. And in some cases, it may serve a very practical purpose - teachers and other school staff do not get much time to eat during the day, especially during IEP time. Everyone will appreciate your effort. Be sure to leave the leftovers for other staff.

Take along a photo. Set a framed photo of your cutie pie on the table for all to see. Before the meeting starts or when you have the opportunity to introduce yourself, simply say, “We are all on the same team, and here for the same reason, to make sure this child gets the best education he can get. This photo will help us to remember this.”

Bring your posse. At an IEP meeting, the school is required to have several people there to represent many different aspects of the educational system. You could walk into a room with five or six school members and feel intimidated. Bring a friend, a spouse, past teacher and/or private therapist. The people you bring may never have to speak up, but you know they are there for you and will provide support if needed.

Do your homework. Look at the Wright’s Law website, read about what to expect in the meeting, review current laws and the draft IEP, attend any local workshops about IEPs and write down questions to ask. Know what is most important to you in regard to the IEP. What goals will you not budge on? What services are you not willing to give up? What changes do you want made? What do you want to stay the same?

Remove distractions. I made the mistake early in my IEP experience of bringing my one-year old with me to a meeting. I was stressed trying to take care of him while trying to understand what the school was saying about Ben. And I had to rush things along because one-year olds don’t do two hour meetings. So, arrive to the meeting early, get a babysitter for any little ones and clear your calendar for many hours.

Adjust your attitude. At a Wright’s Law Conference I attended a few years ago, they stressed the importance of the way in which you present yourself at the meeting. Entering the meeting feeling angry, frustrated or defensive will only set the tone for a stressful meeting, sometimes placing the school staff as the “enemy.” Another common mistake parents can make is to come into an IEP meeting with the “know-it-all” attitude. An open mind and a positive disposition can help people hear what you have to say; especially if you have done your homework and can discuss points intelligently.

*A version of this post first published in 2009.

Parenting an Adult Child with Disabilities: From Group Home Placement to Discharge

vanessainfanzon@gmail.com (VMI) — Mon, 23 May 2022 08:23:00 -0400

Last August, we moved Ben into an alternative family living (AFL) placement, about 90 minutes from our home in Charlotte. It was a three-bedroom house and Ben was given the largest bedroom with its own bathroom.

A typical AFL in North Carolina operates like this: a person with disabilities, the client, moves in with another family, couple or an individual. The client lives in the family’s home and the family receives payment in return for housing, feeding and caring for the client.

Ben’s AFL was unusual: A couple with extensive caregiving experience wanted to run a three-bed group home but needed to apply for the license through the state. They were willing to take Ben as the first resident in a house, separate from the one they lived in. The plan, according to the couple, was to get approval for the group home within a couple of months.

We ordered Ben a double bed, headboard, 54-inch television, new sheets, towels and blankets. Friends helped us move him in.

By mid-March, Ben returned home. Here's what we learned through the process:

1. Start the search for a group home early.

In early 2021, I started reaching out to my contacts at the group home agencies I'd been in touch with over the past few years. I let them know Ben was turning 18 and we were actively looking for placement. I completed the applications and sent referral packets. We did virtual and in-person visits with a few group homes but nothing worked out.

Although I've never used a dating app, it felt like it: The agencies were swiping left.

2. Do your homework.

Ben's case manager heard about an AFL – alternative family living – in Highpoint, North Carolina through a small agency. It was a husband and wife team who were interested in starting a group home within the next few months and were willing to take Ben as the first resident. They had many years of experience working with people with disabilities, especially with similar needs as Ben.

We did a virtual visit first with the QP – qualified professional within the agency, the person who would oversee the couple running the AFL, and eventually the three-person group home. We asked a lot of questions and were satisfied, even overjoyed, with the responses. It appeared to be everything we were looking for in a group home.

3. Set expectations early.

We wanted Ben to be in an active community, participating in Special Olympics, swimming at the YMCA and enjoying the activities coordinated through the local parks and recreation department. Our expectations were clearly stated in an email to all involved parties, sent 20 days before Ben moved into the house.

In High Point, Ben started school at a nearby high school. He had memberships to the local zoo, science center and YMCA. He had plenty to do to keep him occupied.

4. Don't ignore red flags.

In November, several disconcerting things happened. I got a call from the bus driver one afternoon, "There's no one here to get Ben off the bus."

I visited Ben at school at 9:15 a.m. and he looked disheveled. His hair wasn't brushed, his nails were long and dirty and his ankle-foot orthotics were put on incorrectly.

When I asked for a schedule of community activities or a schedule of who was working at the house, I didn't receive a clear answer. For the six months Ben lived away from us, I asked the couple and the QP the same questions: What is Ben doing on the weekends? Who is with him at the house? May I have a schedule? I never received a transparent answer.

5. Look for transparency.

I shared my concerns in writing, always including the QP, the couple running the house and our care managers. Rarely did the QP or the couple return my email with an answer.

6. Understand your support system.

Although we are the advocates for our son, Ben also has care managers with the state-affiliated agency. Unfortunately, we had a change in agencies during the first few months Ben moved in. Also, with pandemic restrictions, no one was making home visits. I kept the agency aware but there were gaps in the system.

7. Listen to your body.

My anxiety increased each time something new and negative popped up. I wasn't sleeping well and I struggled with my worries in vivid dreams.

8. Listen to your child.

For the first several months, Ben appeared happy at the house. When we'd visit and take him out for the day, he'd give us smiles when we returned him to his room. In February, he grabbed my hand and wouldn't let go when I was leaving.

Because Ben is nonverbal, I watch for cues and behaviors that may give insight into how he's feeling. His reaction made it hard to leave him there.

9. Be flexible.

On March 9, the couple sent a letter through the agency letting us know they wanted to discharge Ben within 30 days and we'd have to pick Ben up from school every Friday and take him home for the weekend until the discharge date. We decided on March 10 to get a Uhaul truck and pick Ben up on March 13. Ben's been home since. It's been an adjustment but our family is adapting to yet another stage in our lives.

10. Start over.

We still believe an active and community-connected group home is the best option for Ben. We're a bit battle-weary but we're wiser after this experience.

Throwback Thursday: Winner's Circle

vanessainfanzon@gmail.com (VMI) — Thu, 19 May 2022 07:00:00 -0400

If you're looking for a creative way to make your morning routine smoother, this is something I did when our boys were young. To clear up any confusion about our boys: At 10 years old, Logan chose to go by his middle name, Michael.

This was first published in 2010.

Our mornings are hectic just like everyone else's. I found myself yelling more than I like to so I came up with this crazy idea - and it's working.

We all went to the trophy store and chose three trophies. The trophies were "engraved" with one of these:

Today's Winner: Good Breakfast Eater
Today's Winner: Excellent at Following Directions
Today's Winner: Showing Good Behavior

Rules:

Each morning, Ben, Logan and Sean have the opportunity to receive one or more of the trophies.
At the end of the morning, they may be presented with a trophy.
Not everyone has to get a trophy.
The winner keeps the trophy in their room for the day (think Stanley Cup).
At night, the trophy goes back on the shelf in the kitchen, ready for the next morning's ceremony.

Why is it working?

My focus is on the boys' good behavior, rather than the things they are doing wrong. I am yelling less.
Since I am in charge of giving out the trophies, I am looking for positive behavior because I want them to succeed.
Kids are involved in the solution. They know what is expected to get one of the three trophies, so their focus is on the goal.

All three trophies cost $16. Small price to pay for peace.

Parenting an Adult Child with Disabilities: Getting Assistance from a Care Manager

vanessainfanzon@gmail.com (VMI) — Mon, 16 May 2022 09:06:00 -0400

Ben with Carla Payne, January 2022

When I was a student at the University of North Carolina at Charlotte 30 years ago, I worked in the Alumni Office. Carla Wyatt Payne was the assistant director of Alumni Affairs and my boss. We became friends and have been part of each other's lives ever since. She and another friend were the first ones at the hospital when Ben was born.

I asked Carla to write about what she does as a care manager. The care managing profession is an invaluable resource to families who need assistance managing the care of loved ones. – Vanessa

By Carla Wyatt Payne

I became a Certified Professional Care Manager following the death of my father. As a family, we struggled to navigate the medical health care system. We couldn't afford services or find support for my dad's advancing needs. The month after his death, I returned to graduate school to study gerontology and discovered the profession of care management.

Since 2010 I've worked with over 500 families. Within the past four years, I've also helped aging parents with middle-aged adults with disabilities.

The parents recognize how their own health issues affect their ability to care for their adult child with disabilities. They need a trusted partner to manage the physical, emotional, social, spiritual and mental care of their adult child.

Professional Care Managers who are members of the Aging Life Care Association and who are Nationally Certified Care Managers, follow strict ethical principles including never accepting referral fees from facilities, agencies or other third-party vendors.

Care managers advocate and support their clients while keeping the guardian or family members updated. The client is always the care manager's first priority. The goal is to reduce stress and help the clients save time and money.

Here are a few tips to help you provide the best care for your son or daughter:

1. Build a team of support. Introduce your child to many different people. Get them comfortable with other caregivers, friends and family. I've worked with two families who didn't bring in help and when the aging mother was hospitalized for a hip replacement surgery her adult son wouldn't allow anyone to assist in bathing him. It was a distressing time for the entire family.

2. Create a notebook of specifics about your son or daughter. Explain what your adult child enjoys and doesn't enjoy. Be detailed with bulleted items. It will serve as a resource for caregivers. New care providers can get to know your child quickly with the right information. Make it simple using colored font or paper - LIKES (green) HATES (red). Ask your child to help with the list.

3. Prepare an emergency bag. In case of an accident or crisis, fill a bag with a medication and allergy list, advance directives and comfort items for your adult child. Make a separate tote for yourself to keep in the car. Include a lightweight sweater, extra phone charger, Tylenol, a non-perishable snack, cash for vending machines, chapstick, notepad, pen and a puzzle book or novel in case you are waiting for hours.

More information about care managers and what they do:

Aging Care Matters in Research Triangle in North Carolina, call Carla at (919) 525-6464 or email Carla@AgingCareMatters.com.
Aging Life Care Association
Find an Aging Life Care Expert Near You

Throwback Thursday: It's tough being a kid

vanessainfanzon@gmail.com (VMI) — Thu, 12 May 2022 06:50:00 -0400

This first posted in 2012. I added a few new images.

Some things – eating hotdogs and ice cream and loving the water – never change.

2022

2012

2022

2012

We visited Ryan's Dad this past weekend. He lives at Lake Lure (most known as the set of "Dirty Dancing"). Ben had a great time in the water and especially on the inflatable boat where his brothers did all the rowing. After eating almost two hot dogs, homemade ice cream and chips, he found his spot on the pontoon boat and dozed.

Logan loves the look Ben gives him - the look of love. It is easily seen here. Logan tells everyone that Ben loves him best, and then points to me and says, "even more than he loves you." I cannot argue - I don't get that look of adoration.

Parenting an Adult Child with Disabilities: Referral Packet for Group Homes

vanessainfanzon@gmail.com (VMI) — Mon, 9 May 2022 10:00:00 -0400

If you've landed on this page, you're deep into research about group home placement. By this point, you've found a few agencies with group homes and you want to take the next step and send in an application and referral packet.

I can tell you what I did with our son, Ben. It may be different for your family, based on your comfort level with sharing information with others.

Most agencies will have an application to complete. Some will ask a lot of questions and some won't. No two are alike – I've completed more than 10. I wish they had a Common App for group homes.

Always include the contact information for your child's care or case manager.

I sent a copy of the most recent document with every application:

Budget for services, if your child has one
IEP - Individual Education Plan
ISP - Individual Service Plan
Legal Guardianship document
Medicaid Card
Medication list
Photo of Ben - I use every opportunity to make the process about a person and not some unknown entity.
Psychological evaluation
SIS - Supports Intensity Scale
Social Security Card

TIMESAVER: I made a folder on my computer with each of these items labeled clearly. When I needed to send the referral documents, I pulled them from the folder.