Tuesday, December 16, 2014

Rose Colored Glasses

Within two days, we have received great news about three things related to Ben:

1. When Ben's old tricycle proved too small for him, we started the process to purchase him a larger one a few months ago. Ben's new case manager, who has been on top of the process, called yesterday to say that it had been approved. By the end of January, Ben will have a new blue bike to ride around on. Woohoo!

2. Yesterday afternoon, Ben brought home a letter about where he will attend middle school next year. I visited the two schools closest to our home and one stood out as the best fit. I wrote a letter requesting this specific school, stating the reasons and also called a few people to let them know our preference. I was prepared for a long appeal process if Ben did not get assigned to this specific school. Looks like I can put down my battle axe - Ben was assigned our school of choice. Hallelujah!

3. Since 2013, I have been working to get an accessible bathroom for Ben. It has been a long road with many many twists and turns. Just this morning, I received an email from someone who has been working hard to get Ben this bathroom. The email confirmed that the bathroom will be built. I am meeting with an experienced designer next week who is donating her talents. She will review our plans from over a year ago and make suggestions. Yipee!

In the midst of all this news, I got my first pair of eyeglasses, which happened to have red frames. As I was driving down the road, sporting my new glasses, everything seemed brighter and more vivid. I am not sure if it was my aided eye sight or the weight of worry lifted off of me, but I felt good. Positive thoughts, forced patience and a teensy weensy bit of letting go seems to have paid off.

Friday, December 5, 2014

No Such Thing As Free Coffee

Sean, Ben & Logan at Ben's favorite coffee shop, Smelly Cat.
In the last few weeks, Sean, our six year old, has expressed that he wishes to live with Ben and their cousins when they get older. According to Sean, he and Ben will share money, and Sean will cook supper (his word, not mine). Then he wondered where Ben would work. After talking about a few options, he decided that Ben could work at a coffee shop, wiping down tables and cleaning the floor.

We smiled at Sean's sweet idea to live with his brother when he gets older. Who knows how the future will play out, but it says a lot about what is in Sean's heart.

These conversations with Sean combined with a recent meeting with a mom with a 22 year old child with special needs really got me thinking. This mother was concerned about how her daughter would spend her days when she graduated in May.

I realized that Sean had a point and thinking about this now, and not later was important. Why couldn't Ben work or volunteer somewhere when he is older? And how much older? Ben could volunteer as a teenager at a community organization. There are places that he could develop his skills, form friendships and also begin a routine for when he is out of school permanently. Ben loves the fire department, libraries, coffee shops and sporting events - how could he serve at these places? What creative ways can we help him be a contributing member of his community? Does a cute smile and warm hug brightening a consumer's day count as a job? I think it does!

Lucky for us, other families have already forged their way in this arena. A family I know with a son with special needs worked at a grocery store and then the police department. At the library, a senior citizen and his case worker put DVDs back onto the shelves. Often I see a mom and adult daughter team working at the local children's museum, cleaning up the rooms throughout the day. A close friend sends her teenage son with Down Syndrome to the family farm to work with the chickens every summer.

There seems to be an openness to help our special children find a niche in the community. More likely, as parents, we need to welcome the idea of our children going out into the world and making their own way. We expect it of our typically developing children, plan for it and would be shamed if we did not let them pursue a future for themselves. It may be a different experience - a little scary, more emotional and time consuming, but it is still possible to let our children with special needs find independence as teens and adults.

About a day after those conversations with Sean, he asked "If you know someone, like a brother or cousin, who work at a coffee shop, can you get your coffee for free?" What appeared to be a careful thought process about Ben's future may have been a thinly veiled ulterior motive. Oh brother!

Monday, December 1, 2014

2015: The Year of the No

In September, a family counselor, after hearing our stories of stress and feelings of being overwhelmed with life, declared that we should cancel hosting Thanksgiving at our home. I looked at her dumbfounded. Un-inviting family members and changing the plan seemed like crazy talk, but it also seemed ingenious. Rather quickly, Ryan and I agreed with her proposal. I called family members and told them the situation. The relief I felt was incredible.

The counselor's permission to change the plan and essentially say "No" to hosting Thanksgiving got me thinking about commitments and stress, and it lead me to declaring 2015, The Year of the No. In fact, I have used the last of 2014 to practice. The following issues have helped guide me in making my decision to say yes or no:

Making the Choice
Please do not read this and think I am suggesting you say no to anything that comes your way. I am saying to think about options before blurting out yes. Ask yourself:
  • Why am I accepting this request?
  • Why am I offering to host/attend/join?
  • Is this a good use of my time?
  • What part of my life will change?
  • How will my family be affected?
  • Do I have the time and energy to take this on?
  • How will the person or organization making the request be affected?
Consider the answers to your questions before making the decision. Be sure you are making an informed and conscious choice.

Scope Creep
I am not a Yes Woman, but I can get in over my head at times. It usually happens slowly and unitentionally. In project management, they call it "scope creep", when the boundaries of a job begin to blur and more items get added to the list. Before you know it, you have too much to handle.

You made a promise, a long time ago, in a weakened state of mind, to a close friend, and saying no now would make you feel so guilty. If the guilt outweighs the actual promise, probably best to go ahead and do whatever you promised. But if you can get beyond the guilt and find another way to handle the situation without letting too many people down, then try it out.

When we called the first family member about cancelling Thanksgiving, they seemed relieved. They have an elderly pup that needs their love and care. When researching hotels in our area, they could not find one that would accept a dog.

You cannot predict how people may accept your choice, but sometimes it may work out for their benefit too. Letting guilt make the decision for you may not prove to be the best choice for anyone.

A local magazine offered the opportunity for me to write a weekly blog for them about special needs children. Although I was excited by the idea of getting more exposure, it was an unpaid position and I knew that writing new material for the magazine's website and eSpecially Ben would create a tremendous amount of pressure for me. In the end, I said no.

The editor came back with another offer, which I took.  She asked me to write posts quarterly with some of my past posts being reworked.

Sometimes, the answer is in between a no and a yes. Finding the right blend of needs can get to the best opportunity for both parties at that specific time. As lives change, the opportunity can be molded yet again to fit the needs of everyone.

Tell the Truth
In all the examples above, I told the truth about my situation and the people involved understood. Everyone has been on the receiving end of an offer, opportunity or promise that is too much for them to handle at the time. Empathising is easier than we imagine. And it works the other way - when we hear no, we understand as well.

My best friend hosts a Holiday Cookie Exchange Party every year. I love participating because the cookies are delicious and it is social time with just women. This year, when she asked me about a specific date for the party, I told her that I would not be attending. I love the event, but the amount of baking ahead of time is stressful as well as the added pressure to avoid eating all those yummy cookies. (I was the Cookie Monster in a former life.)

My friend considered what I had to say, and she sent out an invitation to have lunch at her favorite local restaurant. The fun and social time will still be met, but no one has the extra cookie calories or stress of baking.

Whether 2015 is The Year of the No, or The Year of the Yes, make it your own choice. Using a thoughtful process to make your decision will help you feel in control of your limited time and energy. Setting priorities about your family time, health and career will guide your decisions. Being creative with the opportunities may lead to everyone being happy with the outcome.

Happy Almost New Year!

Sunday, November 23, 2014

Once Bitten, Twice Shy

For two years, we have steered clear of jolly Old St. Nick. After the incident at the Shriner's Christmas Party in 2012, we did not want to risk our standing with the big guy at the North Pole. It seems, however, that Santa has let bygones be bygones.

We visited Daniel Stowe Botanical Gardens and Santa was there visiting. I knew Sean, our six year old would agree to a visit, that Logan would say no, but was completely surprised when Ben went nuts with excitement when he saw Santa. With trepidation, we approached Santa with Ben.

Ben savored every moment with this gentle and kind Santa. It was not crowded, and there was no pressure to rush the experience. When we were not sure if Ben was going to cuddle with Santa or pull off his hat, we said our goodbyes. (Well, not until I sat on Santa's lap and took a photo. How many other chances will I have to do that?)

Friday, November 21, 2014

Alex P. Keaton

Logan awoke this morning with investing on the brain. He wanted to buy Apple stock, or perhaps Microsoft. He was unsure. This conversation, of course, was at 7:30am, in the midst of getting three kids ready for school. Not wanting to discourage a potential investor, I sent him to research investing for kids on About.com.

Logan looked up investing vocabulary and found this site, Investopedia. He started a notebook and wrote down important things he learned. He also saw his first "con": a site was asking for personal information and said that everyone was doing it. The counter on the site increased quickly, making Logan think he was missing out on something. A lesson or two later, and he was wiser about how giving information on the wrong sites could be used.

Logan's list for Santa this year may include stocks and mutual funds. Not the way I thought Christmas would go this year, but I can roll with whatever the market bears.

*If you get the Alex P. Keaton reference, kudos to you.

Friday, November 14, 2014

North Carolina Leadership & Advocacy Program

North Carolina’s Partners in Policymaking© Leadership & 
Advocacy Training Initiative funded by 
the North Carolina Council on Developmental Disabilities 

is pleased to announce the opportunity to apply for the 2015 Class of Partners in Policymaking© (“Partners”).  Partners is a nationally-replicated leadership and advocacy training program.  This program is designed ONLY FOR self-advocates with developmental disABILITIES and for parents (and caretaker siblings) of school-aged children with developmental disABILITIES residing in the State of North Carolina.

The program teaches how to garner the skills and employ the tools to become, “effective disability policy change agents” for better, more successful outcomes in their own lives and in the lives of others.

The program is for anyone living in North Carolina who has a developmental disABILITY,  or is a parent or care-taker sibling of a school-aged child with a developmental disABILITY who wants to experience for themselves, or their child or sibling, higher levels of inclusion, independence, self-determination, productivity and integration in their lives.

Please note that all applications must be postmarked by midnight on January 16, 2015/EST.

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If you want a copy of the application, 
send me a message:

Wednesday, November 12, 2014

Ben's Peeps

When I pick Ben up from school, usually one of the staff bring him to the office. Today, they were short-handed and asked if I would walk down to the classroom to get him. As I turned the corner, I saw his classmates lined up on the colored tile, and Ben on the opposite side turned around in his chair, not listening to directions. The teacher was congratulating the class on lining up well and sweetly admonishing Ben for trying to get the attention of one of his friends.

Ben heard my voice and realized I was there, and he reluctantly tore himself from looking at his friend, a little girl he has been sweet on for a few years. He wore the biggest smile on his face.

As we left, he tried to touch one friend who quickly told on him, in a big sisterly sort of way. Another long-time classmate reached for a hug to say goodbye. There was a chorus of, "Bye Ben" from the other children. All the while, Ben was smiling, very happy to be around his gang of friends.

Made my day - we all need a posse like that.

Sunday, October 26, 2014

Kenny & Kevin

This was a post I saw on Facebook - worthy of sharing here. I am also including links to the Special Olympics Unified Sports Program, a recent program that is gaining traction all over the world.

*We are about six months away from our local Special Olympics Opening Ceremonies. 

Friday, October 24, 2014

Thank you, Angel

In the course of working on purchasing new equipment for Ben, I made contact with someone who developed a list of funding sources for families. She would prefer not to be named - we will just call her Angel. Angel did this on her own, to help the families who do not have a way to pay for the equipment their children desperately need.

If you know of others we can include on this list, please add in the comments section or email me directly. The web addresses and information have been checked as of today, October 24, 2014.

Angels in Need
Davidson, North Carolina
Phone: 704-607-5118
Coverage: Local & International

Angels in Need is a 100% volunteer, 501(c)(3) non-profit public charity based in Davidson, North Carolina. It is our mission to serve children with special needs and their families both locally and abroad. Our goal is to enrich the lives of these children and families by supporting already existing programs and organizations devoted to our cause as well as aiding in the development, implementation and financial support of programs where they are non-existent, all in an attempt to provide the children with opportunity and a sense of community in which to blossom. Our target populations include: exceptional children and their families in the Lake Norman area of North Carolina (Davidson, Cornelius, Huntersville and Mooresville, NC) abandoned, orphaned, poverty-stricken and disabled children abroad (Romania and Republic of Georgia) Angels in Need, Inc. operates strictly, 100% on a volunteer basis. There are no salaries involved and there is no facility overhead.

Assistance League of Charlotte
Charlotte, North Carolina 
Phone: 704-525-5228
Coverage: Local & National (www.assistanceleague.org)

Assistance League of Charlotte is a nonprofit volunteer organization dedicated to improving the lives of children and families through community-based philanthropic programs.

In 2008-2009, 161 members generated 32,054 hours of community service to local children, and 513 non-members contributed 13,897 hours. Funds raised are returned to the community through five philanthropic programs: Operation Check Hunger; Operation School Bell®; Mecklenburg County Teen Court; Assistance League of Charlotte Scholarship Fund and Assistance League Outreach.
Assistance League of Charlotte was founded in 1992 and is the 93rd chapter of National Assistance League®.

Bee Mighty
Charlotte, North Carolina
Phone: 704-384-7894
Email: Candace@beemighty.org

Bee Mighty provides funding for medical therapy and equipment to Neonatal Intensive Care Unit (NICU) graduates. Bee Mighty was established so that families can focus on each other and concentrate on the development of their child without the added stress of financial ruin. The Bee Mighty Fund is managed by The Novant Health Foundation, a non-profit 501(c)3. 

Kyle Busch Foundation Charity
Mooresville, North Carolina
Phone: 704-662-0000 ext 110
Coverage: National

The Kyle Busch Foundation is dedicated to providing essential tools for less fortunate children throughout the country. KBF will concentrate its efforts on assisting organizations in fostering a safe environment for children to live, learn and challenge themselves as well as seeing that day to day needs are met.

In August of 2006, Kyle Busch was invited to visit a children's home near Grand Rapids Michigan. St. John's home provides housing and structure to children ages 6-18 that have been taken out of their previous living situation for various reasons.

Kyle accepted the opportunity to meet and spend some time with the children living at St. John's, a decision that would forever change him. His experience provided him with valuable insight into how these extraordinary kids are working to overcome the challenges in their everyday lives. He realized the things most people take for granted are the very things that these children need; a safe home where they encouraged to learn and taught the skills to achieve their dreams.

Shortly after his visit, Kyle made the decision to start the Kyle Busch Foundation to provide assistance to organizations like St. John's and the children who live there.

There are children's homes throughout the country just like St. John's, most of which are in need of assistance. With your help, the Kyle Busch Foundation can help make a difference in the lives of these children.
RHA Howell Care Centers Charity
Durham, North Carolina
Phone: 800-868-9011, 919-803-2960
Coverage: National

RHA Howell's mission is to open the world for people with disabilities and, in turn, enriching the lives of everyone they touch.

RHA Howell has been helping people with disabilities and special needs, and their families, make choices to live more independently for more than 35 years. Integrity, high standards for quality, hard work are at the core of every RHA Howell disability assistance program.

Today, RHA Howell, Inc., carries on the Howell Care Centers tradition. Proven leaders in caring for people, RHA Howell, Inc. is a pioneering force in the field of human services, particularly supporting infants and children.

Ride 4 Kidz Charity
Asheville, North Carolina
Phone: 800-253-6530
Coverage: National

The Ride for Kids® program supports the efforts of the Pediatric Brain Tumor Foundation® (PBTF) to find the cause of and cure for childhood brain tumors. Come join thousands of your motorcyclist friends at events around the country to make a difference in children's lives!

The PBTF is honored to be the official charity of the Honda Riders Club of America (HRCA), which has been the presenting sponsor of Ride for Kids® since 1991. Thanks to the significant support of American Honda Motor Company's motorcycle division, Honda dealers and other motorcycle industry companies, the program has raised millions of dollars for pediatric brain tumor research.

Our exclusive national insurance sponsor is GEICO. This partnership brings together the nation's leading motorcycle charity and one of the country's largest auto insurance companies to help work toward a cure for children's brain tumors.

Speedway Children's Charities Charity
Concord, North Carolina
Phone: 800-236-2354
Coverage: Local

The mission of Speedway Children's Charities remains true to the ideals it was founded upon in 1982: To care for children in educational, financial, social and medical need in order to help them lead productive lives.

SCC is a non-profit 501(c)(3) organization and provides funding for hundreds of non-profit organizations throughout the nation that meet the direct needs of children. Our vision is that every child has the same opportunities no matter what obstacle they are facing.

Variety The Children’s Charity
Coverage: National

The chapters of Variety are a multi-million dollar philanthropic organization with locations throughout the United States. Starting with a baby left on the doorsteps of a movie theater in 1928, we have continued to be a group of local business men and women, many of whom hail from the theater and movie business, reaching out to children in need. Today, through the efforts of our enthusiastic volunteers and generous corporate contributors, we remain true to our heritage by bringing children real, tangible help.

During 2014, Variety of the United States continues our outreach by developing a strongly supported national program to assist children in every community:

Variety's National Mobility Program provides much needed assistance to children with mobility concerns. Over the years, we have found that these children desperately want to be active members of their communities. But they need what most of us take for granted: access. For children with disabilities, this means having the freedom to go where they want to, either on their own, or if they need assistance, reducing the impact they make on those helping them. With the advent of many new mobility technologies, this access is becoming available to more and more children. The goal of our Mobility Program is to see that they get it.

Thursday, October 16, 2014


We chuckled when we referred to the two Bens as BO & BM, their initials forming unfortunate shorthand for human functions not talked about in polite company. They were in preschool together, neither very mobile and left on their own much of the time. Ben's mom, Donna, and I bonded over the mistreatment of our sons, both of us ultimately taking them out of the poor situation. Donna was going through a divorce at the time and had a lot of stress on her. She was a single mom trying to help her Ben.

Donna's Ben had a smile that stayed with me. His eyes were part of that smile and any interaction I had with him, even at that small age of three, I knew that he was listening and welcomed my attention.

After leaving the original preschool, I lost touch with Donna. A few years later, we all ran into each other at a children's library and stayed in touch from then on. Donna wrote a few posts for eSpeciallyBen, and then I did not hear from her for a few months.

At that same children's library, where we had reconnected, I saw a mutual friend. She shared with me that Donna had died suddenly. I do not know the details, but it may have been breast cancer that came out of remission. I was devastated. What would happen to Ben? How would he understand that his mom would not be around? The questions hurt.

Donna's parents stepped in and took over full care of Ben. We saw him often at summer camp and other random outings. His caregiver, who helped the grandparents, was loving and sweet to Ben. Having never met the grandparents, I printed out Donna's posts from the blog and sent them to them through the caregiver. It was my way of showing that I cared about her.

Just this week, I received an email from Ben's grandma, a first. I was excited that she was contacting me. I immediately thought that we could get the boys together. She said she had news to share, but wanted to be sure that this was the correct email.

My brain does not go to bad places quickly. I always assume the positive and I am, for the most part, optimistic. When at 7am, I read the return email telling me that Ben had passed, I was shocked. I cried on and off the entire day, while taking Ben to the allergist, going to the grocery store and getting ready for a work trip. I cry now as I write this on a plane.

I agree with what Ben's grandma wrote me. God has a plan and we may not understand it, but we must trust it. He gives us these beautiful children who change us forever. I grieve for Ben's family that their time with their precious daughter and grandson was cut short. I will miss Ben's smile, but he and his sweet mom will not be forgotten. They are both a part of our life story, made richer by their presence.

eSpecially Parents: Donna & Ben's story

Monday, October 13, 2014

Lemonade from Lemons

In April, Ben received his long awaited larger Convaid Cruiser, a portable and light-
weight wheelchair.  Within a month, the canvas seating began to fray on the corners and Ben pulled off one of the crucial straps for buckling after it frayed beyond repair. Both were quickly replaced by the distributor, the sales company that purchases the products directly from Convaid.

Within days of those repairs, the brake broke and a bolt came loose from the handlebars. Again, the same technician from the distributing company came out and handled the repair. His general diagnosis about the continual repairs was that the chair was put together too quickly, probably on a Friday afternoon. 

On a "it is a small world" side note, the technician had an unusual last name and I commented that I was friends with someone in high school by the same name.  He doubted this because very few families in the world shared this surname. After a careful game of who, what and where, we confirmed that he was first cousins with my friend from high school.

Within a few weeks, Ben's Brand new canvas seat began to fray again. Then our family went to the beach and while Ben and I strolled on the sidewalk, the wheel completely came off the chair.  It took me a minute to realize what happened because we were suddenly lopsided. Luckily, Ryan was a quick walk away and came to our rescue. After some serious phone calls to several people in the company, a technician came to the hotel at the beach and patched up the broken wheel baring. It was not a permanent fix, but If we were careful, it could work for the short while we were on vacation.

Throughout the four months of breakdowns and repairs, I stayed in contact with our salesman who was responsive to each issue.  By the time the wheel came off because of a broken baring, I knew that either a new chair or a complete overhaul was needed. This was Ben's second Convaid chair so we knew that the product was a good one, just somehow, Ben received the proverbial lemon.

Our salesman contacted the Convaid company to see how to handle this situation. Again, he summarized the situation, communicated with the right people, even heard back good things, but nothing happened. We were promised a demo while the current chair was analyzed and repaired.  Several weeks went by, then a month, and no demo. The canvas seating continued to fray and, I was waiting for the other shoe to drop - what would break next at an inconvenient or even worse, unsafe time?

With much frustration, I looked into the Convaid company, deciding to send emails to those who may respond to Ben's needs.  First, I found out that the company was started in the 1970's by a mechanical engineer and his occupational therapist wife, after seeing a gap in the market. Heavy and cumbersome wheelchairs were the only option for people with mobility issues. The husband and wife team designed the Convaid Stroller and started a company.

Next, I reviewed all the emails between the salesman and Convaid to see what had been offered, but more importantly, who had been copied on all the emails. I happened to find a name attached to the email that looked more authoritative than the people we were currently in contact with. I also copied my email to any people I found on the Convaid site that may be higher up in the company.

My email was informative, respectful and I received a call within three hours of sending. Ben had a demo chair the next day. By the end of that week, I knew I wanted to keep this new demo chair. It was a different model, one I had declined from the online photos during the sales process because I thought it would not work for us. Our new contact (and new best friend) at Convaid accepted my proposal to keep the demo. The damaged chair was sent back to Convaid for review. Clearly, something had gone wrong in the production.

Ben has a new chair with a larger back wheel, cushioned seating and a very cool fabric basket underneath. We have had no issues and do not expect to this time.

What I learned: People generally want to be helpful, but things fall through the cracks. Persistence, follow-through and keeping your sanity throughout the process will help get the response requested. Keep good notes and do as much communication through email so there is a paper trail With dates, names and actions. Creative solutions, thinking outside the box and getting others involved can make a bad situation better, maybe even great. 

Friday, September 26, 2014


I write this, in hopes that the feeling of being emotionally drained will dissipate. I attended a meeting coordinated through North Carolina's Department of Health and Human Services. The meeting's purpose was to listen to feedback from parents, caregivers, providers and consumers about the Innovations Waiver and other services through IDD Services (Intellectual and Developmental Delays) and Mental Health.

The Innovations Waiver is a program designed to help parents keep their IDD or mentally ill child at home and out of an institution. Ben has been part of this program for about 4 years. With state and county money, he receives managed care in the form of direct service providers that help with personal care and skill-building activities in the home and community. There is a long wait list to become part of the program, typically taking years to get the services.

Reluctantly, I went to the meeting with the only incentive being that my long time friend, Karen, would be there. We don't see each other often enough so this was an opportunity to see her.


The newly hired Deputy Secretary of Behavioral Health and Developmental Disabilities Services, Dave Richards, started the meeting. A personable and patient man, he seemed to be genuinely interested in hearing what everyone had to say. He gave guidelines for our comments - no personal stories allowed and let's keep it nice. In general, he was looking for system wide changes and ideas for the future. He had staff there recording these suggestions and listening to the problems shared.

About 100 people were in attendance. Most were women, seemingly mothers with children with IDD or Mental Health Issues. Most were white women in their 50's and 60's. There were a few black women of the same age range present. The black women came forward to speak at a higher rate than the white women.

Not many men were present and not one man spoke.

Most everyone who had something to say had the opportunity. The meeting lasted over two hours.

Many of the mothers spoke of their adult child in their late 20's or early 30's who had severe issues, some with both Mental Health and IDD issues. They had been in the system for years and had seen the many changes in programs, services, staffing and support. Overall, they were angry, hurt, bitter and sad. Their stories were heartbreaking. Each told of how they loved their son or daughter, how they tried to support them and may have given up a lot in their own life to help their child achieve some sort of happiness. Many had been lost in the system with paperwork glitches, unhelpful staff or changes in qualifications.

Some spouted out statistics, lawbook codes and judicial cases. Others explained that the policies in place were illegal. The anger spewing from their stories was evident. The hurt, they wore on their faces. The years of bitterness, they wanted to spread to the rest of us. I felt like new meat, several wanting to initiate me into their darkness.

It was hard for me to listen to each new mom that stood up. The room was thick with negativity. I did not want to be a part of this group of people. I felt separated from them. I wanted to be separate from them.

As I drove home, I thought about each of the women and their stories. Would that be me in 15 years time?

Just before I left the meeting, another woman spoke. She shared that she had a 32 year old daughter with special needs. Early on, she had been told that her daughter would not accomplish much in life. This same daughter holds a masters degree now. The mom said she understood the emotions of the people in the meeting; however, her belief was that  the focus must be on solutions. Anger and upset without support groups that strive for action would not accomplish much. The negative energy of the group was not helpful. The woman's words fell on deaf ears. This group had been through the system and delivered upside down.

I feel blessed to have Ben in the Innovations Waiver program. It is paid through taxpayer money, it is approved through state government and not every state provides this type of support. We have had a generally good experience with the people who administer the programs, and I believe that most have good intentions.

Unfortunately, we don't all have good experiences. I am not sure why. Is it education? people skills? not understanding the system? time? lack of 3rd party advocates? miscommunication? or are there more sinister things going on behind the scenes? It does not seem fair and equitable for some to have an enriched experience while others fall through the cracks.

I struggle with all of these issues, knowing that right now, I only have the physical and emotional energy to help Ben.

Although there was a lot of pain and emotion shared, many ideas were gleaned from the complaints.

Dave Richards has a long history of working for people with disabilities. I do hope that his heart and mind are in the right place and that he will carefully lead his department in the direction of providing clear and equitable programs and services for the people who need them. I add him to my prayer list - he has a heavy task ahead of him.

Thursday, September 18, 2014

Five Alive

Five Years
When I started, it was 2009; Ben was six years old, Logan was four and Sean was one. My first post, Love at First Sight, was an "all in" jump. I stayed up well past my bedtime, writing and creating a name for this site. It posted on September 18 at 11:43pm.

At that point, I did not have any long-term goals or expectations for the blog. I knew I wanted to write, wanted to share and for as long as I had something to write about, I would keep doing it. That was it. Not much more thought went into it.

Good Stuff
Five years later, I could not have imagined the outcomes from writing eSpeciallyBen. We have this incredible record of Ben's progress, helping us to see patterns, changes and growth. We made connections across the world with people who care about similar issues. My confidence in my writing increased and I sought out paid writing opportunities. We have become closer with distant relatives who came to know us through eSpeciallyBen. And for close family members, they were able to see me through a different lens, helping them to understand my emotions (that I have them) and everyday battles and successes.

Spreading the Word
The About.com Reader's Choice Awards from 2011 increased my readership quite a bit, and I would like to continue broadening eSpeciallyBen's audience. To do this, I need your help.

Here are a few ways for you to help:

1. Share your favorite post on Facebook with a quick intro.
2. Email this blog with a short introduction to a friend or two, or a hundred.
3. Tweet or share eSpeciallyBen on Pinterest.
4. Share this blog on your blog. I would like to do the same, just give me a heads up.
5. If you have not signed up for the email version or RSS, please do so. This ensures that you receive the post as soon as it is available.

Thank you for all your support. Whether you are a new or long time reader, I appreciate you reading about our family's journey with a really neat kid, named Ben. Thank you for the comments and emails too.

** Wherever you see "Ben" in this post, I linked one of my favorite posts to it. If you are new to eSpeciallyBen, this will give you a starting off point.

Thursday, September 11, 2014

Ben's Own Parkour

When asked to hold onto the
monkey bars, Ben chose to hold
onto Joey tightly.
For the past several years Ben has had therapy everyday after school. This meant he missed out on park time with his brothers. If therapy was cancelled, we rejoiced because Ben could join us. This year, I rethought therapy time and managed to have therapists come later in the day or meet us on the playground.

His new occupational therapist, Maggie, has met us at the park on a few occasions. Ben pet a dog, swung on the swings, ate a snack, rode his tricycle, played with bubbles and tried holding onto the monkey bars. He used his NOVA Chat to make choices about what activities he wanted to do.

This has been a great way to reenergize therapy, involve other kids and help Ben strengthen his skills.

You ask, What is Parkour?

Saturday, September 6, 2014

Reflections & Transitions

It has been a tough transition for Ben from summer fun to school work. Last week, when the bus arrived at our house, there were no excited hands and feet jumping about. The lift carried a confused boy, wondering what happened to those carefree days of swimming, movie watching and lots and lots of time with the brothers. 

On the first day of school, Ben came home with brother withdrawal. He could not get enough of them after school, attacking them with his rough hugs any chance he got.

Assuming that Ben would be exhausted from a day of school and therapy, I was excited for some early nights to bed. Wronger I could not have been; he stayed up between 11pm and 1am each evening. I did not count on this transition, but with Ben's increased awareness, I should have.  Anyone going from an easy summer of fun to a rigorous schedule of school and therapy would find the change a challenge.

Last day at the pool.

Last days of summer freedom.

Tuesday, September 2, 2014

Wired Once More

"Haha, you think you can hold me with these stinkin' sheets!"

Ben's new neurologist ordered a 30 minute awake EEG, a fairly routine test for people with epilepsy. I brought reinforcements in the form of Kim and Bob. Kim is Ben's longtime caregiver and Bob is his favorite character on the Bob the Builder show. Even with backup and distractions, they brought in another technician to hold him down. Ben dislikes anything on his head, and so he fought to take the wires off his head and kicked to try and get off the bed.

"I will let you beat me this once!"
We had called ahead to ask about using a papoose, but we were told that they no longer provided one, but they could provide us with sheets to use. Kim was the ingenious one and wrapped Ben like a burrito. 

Something I did learn through this process was about Clinical Seizures and Sub-Clinical Seizures. Ben has both - his clinical seizures are atonic and this means they are characterized by head drops. The atonic seizures have been controlled with medication since May 2012. On this EEG, the technician did notice frequent sub-clinical seizures, which are most likely normal for Ben. I will ask more questions about this when we get the results in a few weeks. Most likely this EEG will provide the doctor with a baseline for Ben's brain activity and will not give us much additional information.

Overall, Ben did a great job and did not suffer all that much. The technicians were quick, and it was all over before we knew it.

Related Posts
Wired Again
Real Deal: Video EEG
It's Not a Toothache
Curve Ball

Saturday, August 30, 2014

Go Fish Go!

Finally, after two years, I got my act together and organized swim lessons for Ben with an instructor at the pool we have joined the past few summers. I saw her two summer agos working with a child with special needs, even got her phone number, but never made the contact until this year.

Of course, when we showed up for the first lesson, Kathy already knew Ben from school and knew that he was a stubborn one. (That kid sure gets around.) The lesson in the video above is his fourth and final one for the summer and the growth in his abilities is remarkable. The biggest change she made was taking off his life vest and putting on a three-block flotation belt. It made Ben use more of his own body to swim and also gave him the freedom to move more easily through the water.

With such success, we are implementing some of Kathy's ideas in Ben's weekly physical therapy in the pool and talking with the YMCA about finding an instructor that can work with Ben on a regular basis.

Thursday, August 28, 2014

Mini Med School for Moms (& Dads)

Dr. Kilbane was one of the doctors I interviewed for the nutrition article for Charlotte Parent. In order to reach more families at a reasonable price she is offering webinars about nutrition.  Just in an hour phone conversation, I learned so much from her, so I can imagine a series of workshops would provide new and practical information for parents. 

If you are interested, you have to act fast - they begin next week. 


More about Dr. Kilbane: Charlotte Observer Article

The Power of Food

In June, I was asked to write an article about nutrition and its effects on special needs children. 
The article is out. This is the link:

Wednesday, August 27, 2014

The Great and Terrible

The tune "Ding-Dong The Witch is Dead" from The Wizard of Oz rang through my head when I was introduced to Ben's new school speech therapist last week at Open House. It meant the old one was finally gone after three years of doing battle.

I had given up on Ben receiving any type of formal speech therapy at school. The final straw came when I compared three years of IEP and progress notes and found that the therapist had copied word-for-word her comments every time. She changed nothing. From the beginning, Ben's response to her was to kick and bite. I never denied he did those things to her, but it let me know that something was not right and I had the IEP reflect that Ben could not be alone with this therapist.

Luckily, Ben's teacher and principal supported what we were trying to do with the NOVA Chat and communication in the classroom. They did everything within their power to make sure Ben received services, but in many ways, their hands were tied. Ben was not stagnant, but he was not getting the consistent instruction he needed, nor were the staff getting the help they deserved.

This morning I met with the new speech therapist to give her a lesson on the NOVA Chat and discuss ways to use it in the classroom. She caught on quickly and already had ideas for starting conversations with his classmates. Ben's private speech therapist is awesome. We have already begun the process for both therapists to consult with one another on how to best move him forward, and tie what we do at home and school together.

Patience, keeping notes and perhaps clicking my heels three times can sometimes yield the results needed.

Tuesday, August 26, 2014

Riding Down the Open Road

AMBUCS is a wonderful organization, providing adaptive bicycles and tricycles for kids and adults with special needs. Ben is on his second tryke, and this one was a gift from his Aunt Olivia a few years ago.

One of our biggest challenges in the past has been getting Ben to keep his hands on the handlebars, but he is now listening to our directions and holding on tight. We added a strap to help keep his chest in place and provide extra support.

With assistance, Ben can ride up to five blocks now. When he gets tired, he starts to slump over. Holding his chest and body in place in addition to pedaling are hard work, but great exercise. Our goal is to get him to ride all the way to the playground after school to see his brothers. It is six or seven long blocks. I think it will be an accomplishment that will get lots of attention from other kids which is a great motivator for Ben. At the end of the day, like any kid, he likes to show-off.

Joey, walking beside Ben, is one of our faithful caregivers.

Monday, August 25, 2014

Back to School

Ready or not!

Ben - 5th grade
Logan - 4th grade
Sean - 1st grade

Friday, August 22, 2014

Chartered Territory

Many parents with special needs children chart behavior, medicine and any other information they may need to know. Up until this June, I had only made note when Ben had seizure activity and this was at the request of the neurologist. I had made sad attempts to track his sleep in the past when it was haywire, but nothing was consistent because I was too tired to follow-through.

I started this journey with a goal of a four week dairy elimination diet. Now we are on Day 60, tracking the following items:

  • Seizure medicine changes
  • Addition of allergy pill
  • Addition of probiotic
  • Bowel Movements
  • Sleeping hours (including any naps)
  • Dietary changes
  • Cheating with diet changes
We have learned so much from keeping this chart. As you can see from the photo, I did it "old school", on a paper calendar. I used pencil, pen and different colored highlighters to help things stand out. 

These are a few areas in which I think charting may help:

1. It is a good reminder about the healthy changes we are making in Ben's life and a motivator to continue with the regimen.

2. It is instant gratification to see when you are on Day 60 of something you thought you could only do for 28 days.

The yellow highlighted "P" stands for what you might 
think it stands for, and it is much improved from the 
constipation Ben experienced in May and early June.
3. It can validate any suggestions to the doctors based on observations from the chart. "The crazy mother" is at least backed by a paper and pencil chart.

4. For those of us who may be skeptics, it is hard to argue with a chart. Anecdotal stories carry more weight when accompanied with data.

5. Seeing positive change based on new ideas and behaviors motivates everyone to keep with the new system. Other family members and caregivers buy into the changes based on what they can see themselves on the chart.

6. Written down information is always better than keeping it in your head. Things are forgotten, details lost and then it becomes easier to just keep the same course, even if it is not working.

Charting could help with typically developing children too. Tracking tantrums tied to lack of sleep or food, bed wetting and drinking, screen time and behavior. If a chart shows a pattern and that tweaking a few minor things will make a change, it may be well worth the time and effort. 

I hope I won't have to do this forever, but right now, with so many good things happening, it would be foolish to stop now. Recording the progress will only help us make changes that benefit Ben.

Wednesday, August 20, 2014

Weighty Retraction

Ben's annual visit with the pediatrician was today. I was excited to tell her about all the changes and updates he has had in the past year. But before we could get in with the doctor, the nurse had to check Ben's height and weight. First, I was weighed. Then, I picked Ben up and we were weighed together. The nurse did the simple calculations and gave Ben a weight of 69.8.

Huh?  That cannot be! He is 88lbs. Trying to wrap my head around yet another weight dilemma, I kept repeating those same lines about the impossibility of him only weighing 69 lbs. 

So we did it again. I stepped on the scale without Ben, and then with Ben. The nurse checked to see if my feet were placed firmly on the scale and that Ben was not touching anything that could cause an inaccuracy. 

Came back with 69.8 again. 

Two thoughts raced through my head: Damn! I wrote a blog post about Ben weighing so much, and made such a big deal about his weight with friends and family. I even had my father-in-law race out and buy a new life jacket to meet the weight requirement. My other thought had been remembering how relieved I had been that he weighed so much because I felt weaker picking him the past several months. 

So, now I am not only weak, but a liar too. 

Not one to dwell on my faults, I decided to see how this had been a learning experience:

1. I learned that a doctor's scale can be wrong which can be translated to lots of other things. If something does not seem right, even when you are with trusted medical professionals; ask questions, repeat a procedure or in our case, weigh in again. A false 20 lb difference can dictate an unnecessary and possibly unsafe change in medication dosages.

2. After hearing that Ben weighed 88 lbs, I started to lift him less, not wanting to injure myself. Making him walk made more sense because he was 88lbs. Will I go back to carrying his 69 lb butt around? No, he needs to walk when it is appropriate. 

I have to admit, for one short minute I was going to let this weight stuff all slide by without any mention, but my conscience got the best of me. 

Doctor Doctor

When my longtime friend, Carla, strongly recommended Ben see a chiropractor during the period when he was not sleeping, I decided it would not hurt to try it.

Luckily, the mother of one of Sean's classmates is a chiropractor, and I was able to get him an appointment with Neva Doctor

At the first appointment, Ben was apprehensive but warmed to Neva quickly. By the second visit, Ben nearly jumped out of the car to get into the building. Once inside the room, he moved his foot pedals aside to get onto the table. To me, he clearly was enjoying the pressure Neva applied with her special tools. Her approach with Ben was gentle. She did not force him to do anything he did not want to do. She asked him if it was okay to massage his feet or face, and then she waited patiently to see if he responded positively.

The goals of these chiropractic visits were to help Ben with sleep and breathing. Because we have introduced so many things during the same time period (no dairy, new medicine schedule, allergy pills), it is hard to say if any one thing has made a difference in Ben's health. The fact that he is excited to be at the office and get on the table tells me that the doctor must be doing something positive for him.

Unfortunately with school and crazy schedules, it will be hard to plan consistent visits with the chiropractor. We will try to work out something so Ben does not have to wait until next summer to see her again.

Monday, August 18, 2014

28 Days of Cayden

Between the ages of two and four, most of Ben's therapies were at a clinic. I spent many hours with Logan hanging out in the waiting room while Ben did his thing with the therapist. It was not a favorite time of my life, but a highlight was meeting one other mom, named Shira, who also had a child with special needs who was also the same age as Ben.

My first impression of Shira was one of awe. She had a laminated card system explaining her son, Cayden, to anyone who cared to know. It hung from his wheelchair and was brightly colored. Not only was she organized and informative, Shira was also approachable and friendly. Having someone to talk to during the office visit made the time go by much more quickly.

After weeks of spending time in an old dark waiting room, we became friends. Now we do not see each other very often, but we have a bond through our children, shared experiences and respect for one another. I truly feel that if I needed something, I could call upon Shira. (She did bring a large group of girls to the Special Olympics Opening Ceremonies.)

Cayden was a sweet gentle boy, always with a bright smile and very curly blonde hair. You could not help being drawn in by his charisma. It was obvious from the first time I met them that Shira provided Cayden with every possible therapy and care needed. He had the first computer I had seen for a special needs kid.

We attended Cayden's birthday party and Ryan met Joey, Cayden's Dad, and they hit it off too. Logan played with their younger daughter, Skylar. If we lived closer to one another, I think we would visit much more often.

Then one day, Cayden died suddenly in his sleep. We attended a service the family held at a park. Everyone was given the opportunity to write cards and send up balloons in honor of Cayden.

Joey and Shira are remarkable people and incredible parents. We are very fortunate to know them. Cayden's family remembers this great boy with love. Often, Joey posts photos and thoughts about Cayden on his Facebook page. Shira has decided to write 28 Days of Cayden, in honor of what would have been his 11th birthday on August 28th. It will take more than a moment to read, but it is worth every minute getting to know this family and how they operate with such grace and love in their hearts.