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Easing the isolation felt by parents of preemies

A difficult, yet rewarding journey

Eight years ago Nick Hall and his wife Jennifer welcomed two children into this world at 25 weeks. Combined, their children Reece and Graham weighed just 2 lbs. 13oz. “You want to be overwhelmed by joy when you see the babies, but you are overwhelmed with fear,” Jennifer recalled.

Though the Halls were so blessed with good jobs, great familial support, good medical insurance, etc. they still felt very isolated. So few people could relate to what they were going through. Graham only spent 45 short days on earth with his parents. “The length of one’s life does not necessarily measure the impact of one’s life,” Nick said.  Reece is now 8 years old, but spent 4 months in the hospital when she was born. She went home with oxygen for two years taking 10 prescription medications.  Just three weeks after finally going home she returned to the hospital, requiring brain surgery. There is so much more to having a ‘preemie’ than anyone could ever imagine. Finally leaving the hospital is just another step in the overwhelming journey.

Remembering the varied emotions and the countless trials and tribulations of their journey of prematurity, the Halls founded Graham’s Foundation in 2009 to support other preemie parents on their journey. They are so thankful to have Reece with them today and felt they could help make a difference in the lives of families today experiencing the same things they had gone through. “Prematurity is a journey, not a diagnosis,” Nick said.

Offering hope and support

Graham’s Foundation sends approximately 5,000 care packages to parents of preemies throughout the United States, and that number is growing. There are options of care packages for parents with a preemie in the NICU, including a transition package when the baby goes home, and a remembrance package for a family who loses their little angel much too soon.

Though the packages are sent free of charge, the foundation operates on a pay-it-forward philosophy. “People pay it forward or donate, but [the care packages are] almost all sent via donations,” Jennifer said. Graham’s Foundation also offers support via blogs, an active Facebook community where preemie parents can support one another and links to various resources.

 The foundation also maintains a preemie parent mentoring program. Mentors can share experiences based on their own journey of prematurity and can connect with preemie parents to give support and let them know they are not alone. This opportunity for dialogue is just another way the foundation offers hope and removes the feelings of isolation that so many parents feel. 

Want to make a difference?

One of their biggest local fundraisers, Tinis 4 Preemies, will be held on March 6, 2015 6p.m.-10p.m. at the Carranor Hunt & Polo Club in Perrysburg. All are invited to attend. Much more information about the event, the incredible foundation, and ways to donate can be found on their website, grahamsfoundation.org. They may also be reached at 888-466-2948.

Local Group Develops Leaders

Leaders come in all age groups, and some of the youngest ones in Toledo are learning how they can help meet community needs. The students are members of YIPEE (Youth in Philanthropy Encouraging Excellence) and graduates of the Youth Leadership Toledo program, part of Leadership Toledo. YIPEE is designed to give high school juniors and seniors the opportunity to develop leadership skills. The students identify key problems facing youth (i.e. homelessness, teen pregnancy, malnutrition),  then solicit and review grant applications from groups wanting to provide solutions. The students raise funds through fundraisers and direct solicitations, before deciding how the money is be to allocated.  Associate Executive Director Cory Dippold explains, “Ours is a unique program. While other programs like this around the country provide the money to the students, our members raise their own money, then present the grant checks to the agencies. The students are in charge of the entire process and they learn they can be leaders now. We hope to bring out the leadership skills we see in them, even if they aren’t so sure about their own abilities.” 

The group is funded by the Toledo Community Foundation and facilitated by the staff of Leadership Toledo. Mr. Dippold invites inquires at 419 241-7371 or at leadershiptoledo.org.

Torturing a Teenager with Lunch Love

My oldest two daughters have been packing lunches all year. Through the years, they have been mostly ‘buyers’, bringing lunches from home occasionally. But it is Mikayla’s first year in high school and Macie’s first year in middle school and they both feel like they get more time to eat (and socialize) if they can skip the line and head straight to the table.

I am no super mom when it comes to packing lunches. I don’t Google bento ideas. I don’t make star-shaped PB&Js (well maybe once, okay, twice). But I do try to switch it up for them. Some days it’s regular sandwiches, sometimes I make wraps, I have even made up little mini salad bars for them.  The girls enjoy the variety and have actually come home and told me how good their lunches were several times. 

Subpar for the course

The other day, I picked up some hoagie buns for lunches. I thought that subs would be a nice change. I made the subs and decided to wrap them in plastic wrap. The plastic wrap wouldn’t stick to itself, so I decided to just tape the ends together. Well I found some stickers in the junk drawer that said “I am proud of you.”

I thought “How cute! They will get a kick out of seeing that in the middle of the day.” I used to put little notes in their backpacks when they were younger and thought it would be a fun throwback to their elementary days. Pleased with myself, I stuck one “I am proud of you sticker” on each sub and shoved them in their lunch bags.

After school that day Macie mentioned the sticker and said it brightened up her day. I do appreciate appreciation. But then she also mentioned that perhaps Mikayla had not been so pleased with the stickers. Apparently Macie had seen on one of Mikayla’s social media accounts a picture of the sub sticker with the comment, “Really mom?!?!?”

Yes, really

So what does any good mother who appreciates appreciation do? Well, of course, I packed another sub the next day and absolutely covered it with “I am proud of you” stickers. I wish I could have seen her face and heard her laugh when she pulled that sandwich out in front of her friends.

I know that the “really mom” comment was posted with a smirk and an eye roll, but in good fun, and when she pulled out the sub, shouting with mom pride the next day, she knew it was me sending my love by way of a midday giggle.

Raising teenagers is hard, but my plan to get through it is to communicate my love in any and every way I can. Whether it is lunch humor or sending a quick ‘love you’ text or leaving her a note thanking her for her help, making little gestures that remind her she is loved (and keeping a sense of humor) will help both of us get through the teenage years.

The Science Fair

Hypothesis: The trait of procrastination is genetic as opposed to learned.

Prediction: When a child is given a science project the time the project is directly related to the time her parent takes to start any project he has to complete.

My daughter’s school has a science fair every year. As a second grader, I encouraged her to enter into the fair and worked with her to find a project.

The fair would be in February but we got started in early January. This was a real change for me. I am a procrastinator and have always been.  I’m not good with due dates. Even with this column – although the idea may be running around my head for days or even months at a time – I may not start writing until the day before it’s due.

Although we started the project in early January and even finished the experiments a few weeks before the due date we were still assembling everything the night before. We were up to almost midnight making sure everything was together and ready for the next day. In the end – like so many of my projects – it got done and she was excited about the science fair.

That was last year. This year was a different story. We started talking about the science fair well in advance. My daughter expressed an interest in something to do with magnets. We searched Google for experiments and found a few. In the coming weeks we bought magnets, picked up a display board, and planned our experiment.

In approaching the science fair I have tried to be a motivator and implementer but I let my daughter lead. It needs to be her project. In the previous science fair that worked although we did have a lot of last minute things to finish. This time the commitment was there but I think the idea that it would still get done, even if we let some things go to the last minute, had been reinforced by our previous success.

The weekend before the science fair passed and although we had done the experiment and had some good results we had not prepared the presentation board. On the night before the science fair we sat at the dining room table with a half completed project. It was at this moment that my daughter and I realized that this project was not going to get done.

She got upset and cried. She told me how embarrassed she was going to be after she had told her class that she had a project.

I comforted her and told her it would be all right. I even tried to motivate her to stay up late and try to complete the project. (My wife nixed that thought pretty quickly with a look that told me that suggestion was a dumb idea.)

Our daughter learned a hard lesson that letting things go to the last minute can result in some harsh realities. In the end maybe a missed science project in third grade will give her pause to in the future to get things done more timely. That’s a lesson that will last longer than any science project!

Conclusion: Inconclusive. But whether learned or genetic the ultimate lesson is to plan ahead and never wait to the last minute!

Help for Parents of FASD Children

You're pregnant! Reason to celebrate!  A glass of champagne might be in order for other celebrations, but officials of a local organization counsel against imbibing for your celebration. They are familiar with the effects of alcohol on developing fetuses and have been working with children who have been permanently damaged due to pregnant women drinking alcohol.

Double ARC, sponsored by the Sisters of Notre Dame of Toledo, is a small organization that is having a large impact on the families of children with Fetal Alcohol Spectrum Disorders (FASD), the name given to the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. This disorder occurs in 1 of 20 children born to mothers of all races, ages, levels of education and socio-economic groups. There is no cure for the disorder and diagnosing it is difficult. Eighty percent of those with it show no outward physical manifestation of FASD, and parents may have no idea why their seemingly normal infant or child exhibits developmental delays and/or inappropriate behavior.

FASD always involves permanent brain damage of some kind that shows itself in problems with memory, understanding cause and effect, impulse control, poor judgment, understanding abstract concepts, and friendship-making skills, among others. Children with FASD may have cognitive and developmental delays, struggle in school despite average to above average intelligence, and usually behave much younger than their chronological age. The symptoms and the challenges of helping such individuals last a lifetime.

Double ARC works with a diagnostic team of experts from the University of Toledo Department of Pediatrics at the College of Medicine and some volunteers[MS8]  in private practice who donate their time and expertise to do the neuropsychological, behavioral and the speech and learning assessments necessary to diagnose FASD. That diagnosis means that Double ARC can help the parents choose the appropriate supports and interventions for their child, and can  then provide case management and ongoing support for those diagnosed.

The organization offers a variety of services, including

■ Social Skills Training classes for children ages 9-12

■ Classes for parents to help them understand their child and create helpful interventions to help them succeed

 ■ Classes for parents of teens facing the challenges of adolescence

■ Parent Support groups

■ Training for teachers who interact with children with FASD

■ Case management, including attending school meetings to discuss individualized Education 

Programs

Training for social service providers, medical and allied medical professionals, and juvenile justice professionals

Executive Director, Janet Bosserman notes, “we are pleased to have served children with FASD and their families for 23 years and will continue to offer counsel, training and diagnosis. But our greatest hope is that pregnant women or those who are considering pregnancy choose not to drink.  There is no known safe amount or type of alcohol during pregnancy.”

Double ARC is located at 3837 Secor Road, near Monroe Street. More information is available at www.doublearc.org or by calling
419 479-3060.

Step by Step

What are the first legal steps a parent should take if a child is injured at school, a friend's house, etc. while the parent is not present?

 I know your first reaction may be to panic if your child was injured. When my 8-year-old son, Josh, almost died after falling off of a high-dive onto concrete, I was so distraught that I couldn’t even think straight. Since the cause of the accident was the diving board not meeting Ohio Code, the anger I felt only made my distress worse.

 The first thing is to stay calm and focus on your child’s medical attention. It is imperative after any type of injury accident to seek treatment immediately, even if there are others telling you that the injury is “not that bad.” In the case of my son, I was told over the phone that Josh wasn’t seriously injured, yet it turned out that he had bleeding in his brain and had to undergo two brain surgeries, which required him to be  hospitalized for three weeks.

 After you get your child the medical treatment he needs, find out as early as possible the circumstances leading up to the injury. Remember: stay calm, but be firm. Ask questions, take photos and document everything.

What is a Statute of Limitations, and how it can be restricting?  How can I get an extension?

 In Ohio, a personal injury claim involving a minor may be brought within two years of the child’s 18th birthday. A Statute of Limitations is a time limit for filing a claim. This limit is put in place for public policy reasons, but once the time limit passes, the right to pursue the claim is lost if a claim has not been properly filed. For example, even though we filed Josh’s personal injury claim against the facility less than a year after the accident, he technically had until the day before his 20th birthday to do so. While we do our best to settle claims without needing to go to trial, and the statute of limitations can be extended by filing a lawsuit in court. You must get answers sooner than later, so never wait to pursue a claim. Be proactive and take charge early.

What are the biggest challenges of personal injury cases when it comes to being awarded fair compensation?

 Few things are more devastating than dealing with the injury of a child. The emotional toll it takes on a family can also turn out to be the biggest challenge when it comes to assessing what is fair compensation. Many families are so distraught that stress prevents them from understanding their legal rights. Anyone dealing with the aftermath of a child’s injury should allow an attorney to take over the legal portion of the claim so your focus can be solely on your child.

 There are very key pieces of information – like medical records, investigative reports, photos, witness statements and expert testimonies – that must be gathered in order to receive fair compensation.

 It is very difficult for a parent to obtain these alone, especially when trying to nurse a child back to health. You know your child better than anyone. Give them the gift of your undivided attention and let an attorney handle the rest.

Attorney Chuck Boyk has been practicing personal injury law in northwest Ohio for over 30 years. In August 2010, he was forced into the role of a client after his son Josh’s near-fatal injury. He decided to tell his family’s story as a way to help others by writing I’ve Stood in Your Shoes, which he offers for free to anyone in the community.
For your complimentary copy, visit www.ivestoodinyourshoes.com or call 419-241-1395 today.