Parents of Special Needs Children vs. Parents of Typical Children

A parent recently shared with me a blog written by a parent of a special needs child. Read the article here:
http://www.ellenstumbo.com/confessions-of-a-special-needs-parent-the-hard-things/

As I read the article, I thought of a recent conversation I had with a parent regarding my typical son. While this parent and I have worked together for the last five years in providing support to her special needs child, initially I was careful in my statements regarding my worries and concerns for my son so as to not be offensive to her or to seem ungrateful for my typical son.

I disguised my worries and fears for him in jokes that had us both enjoying a deep hearty laughter that cleanses the soul and releases stress (contrary to my public persona, I can be a comedic genius in a relaxed atmosphere!).  I shared evidence of his not being ready for the world by relaying stories of his follies over the last year: fender benders, traffic court, and most recently his being offended by a 911 operator that hung up on him when he called to report the emergency of locking his keys in the trunk (he called back to make sure they didn't just get disconnected and was informed to not call again).

As our laughter subsided, the parent said to me, "You  know, I never have to worry about those things."
Honestly, for a moment I was taken aback. She went on to say, "It just hit me how lucky I am to have that kid just the way that she is. I don't have to worry about what is going to happen to her behind the wheel of a car or any of the things you are talking about. I get to do what you wish you could do, which is protect her for the rest of her life. Maybe it won't be me personally doing it forever, but I get to put her in a position that someone is always there looking out for her."

I came to a beautiful realization in that moment. Parents are parents. There was no need for me to be careful in talking about my typical son to her. In fact it was a bit arrogant on my part to think that my concerns about my typical children would be a cause for offense to her. The idea I had that it is poor manners to complain about our typical children to a parent of a special needs child was wrong. Parents are parents.

After I finished the article, Confessions of a Special Needs Parent. I came to the conclusion that I can relate to every confession the mother listed on some level. While I don't understand every challenge faced by parents of special needs children, I do understand what it is to be a mom. Regardless of the package, worry is worry, fear is fear, joy is joy, and love is love. Rather than our looking at the world from our opposite sides, I think it is best for us to understand we are all part of the same coin; if we can do that, we can accomplish amazing things through our acceptance, support, and love of each other.

A little about Ted.

Retired? Heck no! Ted Barcus age 69 is still going strong. He works for ODOT three days a week as a custodian and is showing no signs of slowing down. 

Ted started his work career in 1959 at the age of 15 after being in the 6th grade for three years in a row. Ted knew that he wasn’t going to traditionally finish school and decided to work at the old Sohio station.  Through the years, not only did Ted work at the gas station, but he worked at Delaware’s first sheltered workshop at Bellpoint, at the fairgrounds where he fed horses, and at Buns restaurant for 5 years. He started working at ODOT through the Alpha workshop community employment in 1986 and has been there ever since. “This has been my favorite job” says Mr. Barcus when asked about his employment history.

Ted is able to live alone in his childhood home with support from Bridges to Independence and Delaware County Board of Developmental Disabilities. Bridges helps him in the community, going to his appointments and some light housekeeping. His sister also provides natural supports for him. He enjoys many hobbies including collecting John Deere and Oliver tractors, going to the county fair and to the local library. Ted recently reminisced about a dance he attended in 1969 as seen in this photo.

Wow!!! Still working at 69! A great thanks to Ted's provider, Bridges to Independence, the Delaware County Board of Disabilities, and Ted's sister for being the support system in Ted's life that allows him to live with independence. While sheltered workshops are becoming programs of the past, it is wonderful to learn that some individuals, such as Ted were able to benefit from their original intention!

Caiden's story

Caiden’s story

Caiden was born August 29, 2003, as a healthy red-headed baby. He was precious and full of smiles and laughter. His blue eyes would stop you in your tracks, absolutely brilliant. We noticed that he would cry in the evening and rarely sleep through the night. Our physician said he was colicky which would make him irritable and cause him to cry. He also had seasonal asthma like symptoms, which supported the irritability he demonstrated. But it was mainly at night. He was a happy camper during the day.

At the age of 20 months, his daycare teacher noticed his left eye would wander when he would look up at her. I noticed his depth perceptions were being affected. He fell out of the sliding glass door and would fall for no apparent reason.  I handed him a carrot and he wasn’t able to grab it from me, he kept reaching beyond it.  We took Caiden back to the doctor, as we were concerned with his vision changes. He sent Caiden to get a CT scan to see if he had suffered any brain damage that would be causing the visual changes. The CT scan revealed he had calcium looking things in his eyes. This probably meant cancer tumors. We then went to a pediatric ophthalmologist to confirm the diagnosis of bilateral retinoblastoma.  

At the beginning of the following week, we met the ocular oncologist who would be treating Caiden’s eyes and then the oncology team that would be treating the cancer with systemic chemo. I can’t describe my emotions with words, but thinking about that week, brings them back immediately. Caiden underwent MRIs, PET scans, broviac port placement, sedated hearing tests, local chemo treatment, and systemic chemo. He was only 21 months old and had to be sedated with each procedure. It was the weekend of July 4^th, 2005, that he started his first round of chemo.

Every three weeks he underwent eye exams, localized chemo, and then systemic chemo. We checked in Friday morning and were discharged by Sunday afternoon. During those three weeks we would make trips back to the hospital to have blood work checked. We had to give him shots to help his body recover from the treatment. We joked he would make a good wrestler. It took 3 adults to give him his shot every day. If he could get his legs on your chest, he would be able to lift you off of him.  If we only knew then what we know now.

He took chemo for 6 months, and then the month of December was spent with 25 treatments of radiation. Again, requiring sedation with each treatment.  Then he had a break from chemo for 6 months, but the eye exams revealed the cancer was coming back. We were sent to San Francisco for experimental treatment. We spent a week there and then 3 weeks later returned for his follow up. The new chemo was working, so we could then go home and continues treatment. In 6 months, the chemo stopped working, again. We were also told he was maxed out on the amount of chemo he could have without increasing his risk of leukemia, higher than it already was. He was watched by the ocular oncologist until he felt it was no longer safe to keep his eyes. If the cancer got to the optic nerve, it would have a one way ticket to the brain. So March 19^th of 2007, Caiden had his left eye enucleated. The physician continued to watch his right eye until if fell to the same fate of the left eye. It was removed on September 24, 2007. He 4 years and one month old. After surgery, he wanted to know when he would be able to take the patch off his eye and see again. We had to tell him, that the light wasn’t coming back this time. I was so fearful that he would live the rest of his life in darkness. Would he be mad at the world, mad at God, mad at me?  We told him God would bless him with beautiful pictures in his mind that the rest of the world couldn’t see, a gift just for him.

When he went for the follow up visit with ocular oncologist after he removed his right eye, he asked Caiden if he understood why he had to remove his eye. He asked Caiden to forgive him, for having to do that to him. Caiden gave him a hug and said, “Its okay, I forgive you!”  Not a dry eye in the house. 

Caiden was treated in Grand Rapids, Michigan, where he was born. But after kindergarten, we realized he needed special education. The public schools where we lived were excellent, but unable to meet Caiden’s needs. He is very smart, but very active and difficult to keep him focused. We weren’t sure if his behaviors were from PTSD, ADHD, sensory integration, or vision loss. We went on a road trip to check out the Indiana School for the Blind and the Ohio State School for the Blind. Our intention was not to move, but to bring back their ideas and then have our school district implement them.  When we visited OSSB, we quickly realized, we could not replicate the Braille emersion he would receive there. That trip was March of 2009. In April I had a job and in May we had found a house to rent. We were moving to Ohio.

Caiden has excelled at OSSB. That is where he was introduced to wrestling.  Having a blind child was new to us, but being a physical therapist, my goal was not to let it limit him. We got him in youth wrestling and would attend practice with him to be able to walk him through what the other kids were observing the coach. This was a challenge because neither of Caiden’s parents knew how to wrestle. Each year he got a little better.

This year was his 4^th year of youth wrestling. He started wrestling in tournaments.  People began to take notice of him. I believe they were impressed with the fact that he wrestles and he is blind. Wrestling is a very intense sport, and then try it without seeing your opponent.  Wrestlers, coaches, and referees have all told Caiden to stick with it. He is a good wrestler. But having vision is very much an advantage.  But that didn’t stop Caiden.

Autism Awareness and Acceptance has recently become dear to our hearts. Both Caiden and his older brother were diagnosed with Asperger’s Syndrome. These kids are often brilliant, but have difficulty with socialization. I think these kids are considered odd or weird. They are often out casted by the popular cliché. With Autism being a spectrum disorder, every kid with autism is unique. I think nonverbal kids might receive more grace because the different-ability is obvious. But kids like my boys, are often teased because of their social awkwardness. The difference is not obvious like a wheelchair, walker, or assist from an aide. This end of the spectrum needs acceptance, too. 

Caiden received his arrow of light in April, from Cub Scouts. Caiden also runs on the Delaware Special Olympics Track Team and he swims on the SO swim team.  He plays piano, cello, and trumpet. He is one amazing kid and I am blessed to be privileged to be his mama.

The Art of Waiting

Joanna Evans

Early Intervention Specialist-Delaware County Board of Developmental Disabilities

Certified P.L.A.Y. Project Home Consultant

These days we all live in an instant gratification society.  Waiting for anything can always be a challenge. Waiting in line at the grocery store, waiting for your tax refund check, the list goes on.  Is waiting ever a good thing? When it comes to children with Autism Spectrum Disorders or kids who have a speech and language delay, waiting is often one of the best things we can do.

Parents, caregivers, therapists, and home consultants all want to help a child learn to communicate as quickly and efficiently as possible.  It is difficult to see children struggle with the frustration of simply not being able to communicate their most basic wants and needs.  Ask many parents of children with ASD just starting out on the treatment journey and they will most likely tell you their greatest desire: “I just want my child to talk.”  And with this desperate plea, the ball begins to roll.

The basic instinct, even for professionals, is often to try and teach instead of simply having fun interacting with the child.  We want the child to speak and communicate just as desperately as the families do. However, more often than not, the best way to find out what a child can do is the opposite of what we might think; Do Nothing. In a recent P.L.A.Y. Project training webinar,  Dr. Rick Solomon said: “If you really want to see where the child is at, do nothing...Waiting is a perfect way to ‘honor the child.’” This allows us to step back and ask ourselves:  “Where is the child’s attention?  What is his or her intention?”  Dr. Solomon calls this “Putting on your Zen Head.”  At that moment, we have no ideas or preconceived notions of our own...we are simply allowing the child to be where he or she is in the moment. To simply “be with” the child...no teaching, comments, or directives... this is often the best way to interact and almost always leads to some profound communicative exchanges.

Any time you wait, you risk “losing” the child--and that is OK!  Give yourself permission to take risks, otherwise you may not know how far the child is able to take an interaction.  Open a circle of communication, and then wait...up to 10 seconds!  This can often feel like an eternity, but for a child just learning to communicate, he or she needs time to process the request, formulate a response, then the brain must send all the proper signals to the muscles in the mouth and vocal cords to make a sound--it is a process that is not always automatic in the very beginning.  Think of it as a way to pose a challenge to the child. You are telling him or her: “I have confidence in you and your ability, and I will be patient while you show me all the amazing things you can accomplish.” Communication is a dance--often a very subtle dance, in which both partners, the child and the caregiver or professional, are in perfect sync.  The adult does not always have to take the lead. Allow the child to lead and you may be surprised how far they take you.

 

It is crucial that professionals share their intention regarding their waiting strategies with the parents and caregivers before, during, and after P.L.A.Y. sessions.  At times, as P.L.A.Y. Project consultants or therapists, we feel that we are under pressure to make something happen when we are working with a child and their family.  The art of doing nothing and simply waiting is actually very purposeful and can be a powerful tool.  Explaining this to the families as it happens in the moment helps everyone relax and enjoy each and every interaction and watch the magic unfold.

I love the advice given here by Joanna! Patience is a difficult thing for many of us to practice. We want results now! Joanna's piece is a wonderful reminder that which is good takes time. The things that stay with us are the things that we have to work for to obtain. It is a lesson not just for parents looking for results in their children receiving therapy, but for us all.

We thank Joanna for her insight!

Rachel's story.

Her Beautiful Life

By: Wendy Dittman

Rachel Nicole Barber is a self proclaimed country girl.  “I love living in the country and I love my family,” Rachel professes.  The first child born to Molly and Greg Barber may seem like a quiet, timid girl at first glance, but spend time talking with her and you find that is hardly the case.

 

Rachel Pictured Above

Who is Rachel Nicole Barber?  Well, for starters she’s a teenager - fifteen to be exact. She is in the 10^th grade and attends a small, private Christian school in Delaware, Ohio.  Rachel shares many traits with kids her age!  She loves music (One Direction) and books (The Hunger Games and Mortal Instrument Series), but as we engage more in our conversation, I also learn there are other issues that concern her.  While comfortable chatting with me Rachel tells me, “Sometimes it’s difficult to know what to talk about with kids my age.”   She wants be understood and to define who she is on her terms.  “Teens can be real good at hiding what they are thinking or feeling, because they don’t want to get judged by their peers,” shares Rachel.  Teenagers and their parents can certainly relate. These years are a roller coaster ride named the Turbulent Twist! 

I met Rachel when she was just two years old.  Looking back now, I count that meeting as one of the grateful moments of my life.  Rachel’s mom, Molly and I met in the halls of the neonatal intensive care unit.  We developed a friendship with the kind of strong, unique bond that only few can fully understand.  Like Rachel, my daughter was born with a rare and painful skin disorder called Epidermolysis Bullosa or EB.

Anna, Dittman Family Pictured Above. Left to Right Wendy, Thalia, Maddy, Anna and Todd.

The skin is the largest organ in the human body.  Epidermolysis Bullosa results in severe blistering and trauma to the skin and mucosal membranes.  Rachel was diagnosed with the most severe form of the disorder, called Recessive Dystrophic Epidermolysis Bullosa.  Her skin, so fragile, is covered in white bandages to protect her…..every day of her life!  The depth of complications people with EB experience varies as do the strategies they use to cope.  For certain, overcoming physical and emotional pain remains a constant, unrelenting challenge.  Complications from repeated blistering can lead to deformities of the hands and feet.  Strictures, which damage the lining of the esophagus, prevent food from being swallowed and harmful abrasions perforating the cornea of the eye can damage vision.

Rachel knows the statistics and odds, but they can’t counter her amazing resolve.  She pushes herself everyday to forge beyond the chronic pain.  Surprisingly, her secret weapon is pure, sweet wit and a captivating attitude.  “My EB is not going to go away, so get over it,” declares Rachel.  Her conscious decision to view her life through a different lens is one I long to understand.  We talk about where that resolve comes from.  Was she born with it?  Is it because of living with EB?  What role do teachers, friends, nurses as well as the tight-knit support of her brother (who also has Recessive Dystrophic EB), mom and dad and extended family play?

 

Barber Family Pictured Above.

Getting beyond the pain is the only way for Rachel to see what is good.  She tells me, “Everyone says I see the good in others”.  We talk about the closeness she shares with her mom.  Rachel understands how much Molly yearns to defeat EB and take it away from her.  Mom tells people, “EB is the most terrible disease”.  “I just have to look at it as part of life.  EB doesn’t rob me of my life.  It never will!”  For just fifteen years old, Rachel has an amazing resolve to forge her own views; a testimony to the power of her mom’s love.

Rachel also leans on the healing power of humor in her life!  She can’t help but laugh when we talk about Nana and Papa.  “Papa is always dishing out the jabs and I am pretty darn good at giving it back to him now,” declares Rachel.  Of course, Nana is one of her biggest cheerleaders!  “I am her only granddaughter!” Rachel’s grandparents have always been there for Rachel and her brother, Matthew!  They play a big role in their lives.  “I am always meeting new people with Nana” Rachel says with a smile.  I’ve met Nana and understand….She’s quite outgoing!

What’s everyday life like for this determined 10^th grader?  It’s a balance to juggle all the expectations of school under normal circumstances, let alone adding in the extra two hours of bandage changes four times a week.  Rachel is surrounded by supportive people and she is especially thankful for her friend Lauren.  The girls attend school and work as teacher’s assistants together.  

They share the same lunch period and between classes Lauren gladly lends a hand, carrying Rachel’s books.  When the demands of school get overwhelming, Rachel is allowed to have extensions for projects.  She tells me she appreciates the accommodation, but also feels guilty at times because she wants to be “treated like everyone else.”

There are times when the emotional challenges of living with Epidermolysis Bullosa can out shadow the physical pain of the disorder.  Rachel describes how tough it can be when people stare at her.  “Gosh, I just wish I could be like my brother.  He strikes the biggest smile and waves happily to people!”  “I love that about Matthew!”

Rachel and Matthew Pictured Above.

I inquire about the future.  I saw Molly post a picture on Facebook of Rachel proudly beaming with driver’s permit in hand.  Look out Dad!  Her latest battle with a serious corneal abrasion did not keep her from attending her Homecoming dance.  Come fall, she will be enrolled in additional classes, including an on-line university course.  Rachel tells me she dreams one day of visiting England with Matthew and her parents!  “We joke about the trip, but I know we’ll find a way to do it!”  Having goals, pursuing dreams, finding joy….oh and one more thing, says Rachel, “I love my family!” 

Beautiful
life you are living Rachel Nicole Barber. 
Just beautiful! 

What a beautiful story! Please support Rachel by visiting https://debra.thankyou4caring.org/pages/general-donation-form---rachels-story

Courtney's story

Courtney was born with Cerebral Palsy but has never let this get her down. She has always had a tenacious spirit and was born with a “can do” attitude. It was this attitude that led her ambition to be voted to the homecoming court at her Delaware, Ohio high school.

In 2013 at her annual Spring IEP meeting, Courtney decided to make a personal goal to be nominated to the homecoming court her senior year. “It sounded like a fun idea and I wanted to do something different for my senior year. So I put it as one of my goals” said Courtney. With her goal set and with the help of her good friends, she formed an action plan.  The group came up with a YouTube video and Twitter account and set out to win the votes of her classmates. It became a real 21^st century campaign.

Not only did Courtney get on the Homecoming court with her good friend Caleb, but they went on to win Homecoming Queen and King. When asked, the advisors in charge said this was a special event. Although there was a nice mix of students in the running for the Homecoming court, it appeared that the student body that normally did not vote or play an active role in the outcome was using this event as a platform to get involved. They were invested in the outcome and embraced the difference. With a school body of 1400 members, Courtney and Caleb won by a landslide. It was an overwhelming pledge of support for the girl who was used to obstacles.

Courtney also participates in school by answering phones in the office and working in the library during her free periods. She goes to typical classes and especially likes video production class.  Upon graduation, Courtney will be seeking full-time employment using her new skills as a receptionist. 

We are glad to read and share Courtney's story! One of the most important things that we can learn from Courtney is that no matter what life throws at us, it is our attitudes and ambitions that decide our fates. We are the masters of our fate and the captains of our souls. Let us remember "impossible" things are happening everyday. We wish Courtney success with her career goals and  in life. Congratulations Courtney! 

Beyond failing to report

10tv reports the 30 day sentencing of a nurse in the death of Makayla Norman.
Click the link to read the report http://www.10tv.com/content/stories/apexchange/2014/04/30/us--malnourished-teen-death.html
In addition to the sentenced , Kathryn Williams RN, 3 others were indicted in this child's death, Angela Norman (mother), Mollie Parsons (LPN), and Mary Kilby (RN). Court documents reveal that at the time of Makayla's death, she had lice in her hair and eyebrows, un-bandaged bedsores covering her body; some of which were filled with dirt and feces, a two inch impacted rectum,an interior pelvic area obstructed by a dilated colon filled with feces, which had begun to block one of her kidneys; a build up of thick, dry secretions due to a lack of oral care, and pneumonia in both of her lungs. Her cause of
death was determined to be nutritional and medical neglect, with the death being contributed to by complications of cerebral palsy.
Kathryn Williams RN, was the supervisor of Mollie Parsons; according to documentation and billing submitted for payment, she visited Makayla one time monthly. Mary Kilby RN, was the supervisor to Kathryn Williams and according to documentation and billing, visited Makayla one time every six months to ensure her continued eligibility of services. Mollie Parsons LPN was the direct care support to Makayla; according to her documentation and billing, she provided services to Makalya for 11 years, 48 hours per week; although neighbors report only seeing her 3-4 times per month (My gut tells me that the 3-4 visits per month were most likely to split funds with Makayla's mother rather than to provide care and services to Makayla).
The health care professionals responsible for ensuring Makayla's health and safety are guilty of so much more beyond failing to report the abuse and neglect of Makayla. In my opinion, setting aside their theft of tax payers' dollars for fraudulent claims, they each are responsible for her death itself. They each made the decision time and again to not care for Makayla and to not ensure her health and safety.
There are many fantastic people in this field that do a wonderful job of providing care and assistance to those that require support. However, those few that prey on the vulnerabilities of the system itself and those that rely upon it, leave an ugly mark on us all.