Navigating Life's Detours
Finding the right path for a teen with special needs
Why do I run?
I run because it helps me to navigate life’s detours.
As the parent of a child with special needs, I never know when I’ll be able to get to the gym, yoga, crossfit or any of the other physical activities many people take part in.
But at almost a moment’s notice, I can lace up my running shoes, do a quick stretch and take off down the road.
My father was a track and a cross country coach when I was growing up, but I didn’t take up the sport at the time. It’s always been in the back of my mind though.
It was at the beginning of 2013 when I finally decided I needed to do something to get healthier.
Many people have told me I didn’t look like I was in bad shape when this all began, but I had noticed the numbers on the scale creeping higher, and I was borderline for high blood pressure. Plus, my mother had passed away and that happened after quadruple-bypass surgery.
Something clicked, and I decided to give up the crap I had been eating and fill my diet with more white meat and plenty of vegetables.
That worked for several months, but it became harder and harder to get the scale to continue to put smiles on my face. That’s when it became time to add exercise.
I work with Jim Payne at WESH-TV, and I knew he had a 5K run coming up to benefit the Kids’ House Wayne Densch Children’s Advocacy Center. I now had a goal to run in that race. I had about 10 weeks to get my body in shape for it.
Luckily, my good friend, Don Hettenbach, was also trying to run, so we could endure the pain of getting in shape together. How hard could it be? It’s just 3 miles, right?
I found an online resource that really helped me at RunKeeper.com. I set myself up on a training program, stretched and was out the door.
I got to about the entrance of my subdivision and thought I would die. Instead of giving up, I walked the rest of the time. The next time I ran, I went a little farther and continued to increase my distance until I ran the whole time. I had run a 5K and still had a few weeks before the race.
When race day rolled around, I felt ready. A neighbor of mine was also running, so we had the support of several people, including Paige, and J.P. at the starting line.
During the race, I even noticed Jim Payne come up beside me and tell me I had great form. I thought it was cool that we would be running together for a bit, but then he took off, and I was amazed at his speed. This year, I’ll be ready to do much better, and hopefully, keep up with him.
I finished in just over 36 minutes, which isn’t a great time, but it was a beginning and proved that I was capable of it. I have gone on to run several other races, including the Winter Park Road Race, a 10K, in April.
I’ve also spent time cycling, and recently completed a 20-mile ride.
All in all, my healthier eating habits and exercise have allowed me to lose 40 pounds.
So what’s the moral of the story? Don’t feel like just because you have a child with special needs that you can’t take care of yourself. You’re of vital importance to your child, so find a way to do all you can to stay healthy for them.
It’s not just something for your physical well-being, it will reduce stress and give you time to process your thoughts and emotions.
Take care of yourself. It really will make you feel better all around.
The packing process begins
In just one week, we’ll be waking up in a dormitory and beginning our training to get J.P.’s canine companion.
We’ve already received our textbook and will be studying to prepare for our classes. You must pass daily quizzes and an exam before you get the dog.
But the big thing on our minds right now is just the process of getting there.
Having a child with special needs means they can’t pack, and they need a lot more stuff.
We’ll be taking formula, feeding bags, diapers, wipes, medications, underpads, syringes, braces, a bath chair and several other pieces of equipment, including a feeding pump, a suction machine (just in case), and who knows what else.
Paige is the planner when it comes to the packing process. She asked me several days ago to take the lead on it to which I replied immediately, “You won’t let me.” It’s just something I’ve learned after almost 20 years of marriage. Really. I would start, but somehow in the middle of it, she would end up taking over.
I told Paige that I think we should just make it a team effort. Two heads are always better than one.
Hence, the packing process will begin a week early, and hopefully, it will be a smooth process without us running around at the last minute wondering if we have some vital thing as we’re trying to get out the door.
Living in a dormitory will be new for both Paige and I. Neither of us did that in college, and we’ll have only a double bed. We have a king-sized bed at home. It makes me think of “Mike & Molly.” How do they sleep in that tiny bed? J.P. will have a hospital bed.
We’ll share a common kitchen with 12 other families. We’re responsible for breakfast and dinner, and Canine Companions for Independence will provide lunch. I’m seriously considering packing the Keurig because I don’t think I can live without it at this point.
We’re excited about the entire process. It’s weird to know we’ll have a new family member so soon and know so little about the breed, name, etc.
However, I have faith in the people at Canine Companions to match J.P. with the perfect dog, and I know we’ll be ready to learn all we’ll need to know to be the skilled companion team the dog deserves after all the training he’s acquired.
It will also be cool to see the coverage on WESH-TV and WESH.com. The station should be there for unprecedented access to the training process and graduation. I’ve worked with Dave McDaniel for many years, and he’s a top-notch reporter in Central Florida. I’ll share links to the coverage posted online here.
It’s less than a week away now. Better get packing!
It’s someone’s birthday!
Someone will be opening presents Sunday, and it’s not J.P.
Paige, J.P. and I will be gathering with family to celebrate Paige’s birthday, and all she keeps saying is she wants to go shoe shopping.
But Paige’s birthday is about a lot more than shoes or gifts.
We have a lot to be thankful for after her bout with breast cancer four years ago, the aftermath with chemotherapy and what doctors called neurally mediated vasovagal syncope.
That’s right. You’ll find some bizarre medical terminology in this blog.
I remember Paige saying, “I can’t have breast cancer. I have a child with special needs.”
I’m so thankful that Paige is such a trooper. She faced the breast cancer diagnosis and beat it down. She’s a lot stronger than many may have thought, and I was there to support her every inch of the way.
It’s at times like that when we learned we’re blessed with wonderful friends, a great family and an awesome son.
I was able to continue working, and Paige’s parents, her brother, her best friend and my sister all spent weeks at a time helping us to care for J.P. and her.
We thanked God when we learned her breast cancer did not make it to her lymph nodes, and she was even happier when the chemotherapy was finished.
Unfortunately, the very drugs in the chemotherapy that we’re killing the cancer ended up damaging her nerves.
She’s been getting better this year, and she found acupuncture made a big difference in her recovery.
I’m thankful that Paige was able to get through what was a very tough time, and I know she’s glad she’s still here to watch J.P. grow and mature.
I know we’ll enjoy her birthday together as a family. It has new meaning and significance after all she has been through — even if it does mean a shoe-shopping adventure.
Making the hospital hospitable
I shared a bit earlier about how all the time we’ve spent in the hospital over the past 11 years turned into almost a second job for me.
Florida Hospital for Children is practically a second home, and there are plenty of employees there that have called J.P, their patient ever since he was a baby. Paige figured out a while back that J.P. averages about six weeks a year in the hospital.
I truly believe there’s a brightness — a spirit — in the place. I guess that’s why they say they extend the healing ministry of Jesus Christ.
I’ve come to know many of the upper-level managers at Florida Hospital for Children, and in case you’re wondering, it’s a completely different staff than Florida Hospital-Orlando.
These people have a heart for kids and making them well. They also have a strong belief in family-
centered care. That means the doctors aren’t going to make decisions by themselves. Parents are a vital part of the care team.
Parents are such a vital part of the hospital leadership that they established a Family Advisory Council that meets monthly to review hospital policies, make recommendations, provide input to various committees and assist with special events. There’s also dinner and much more at the meetings.
When I first began attending, I was skeptical. It’s one thing to have a council, but I wondered if they would really listen. We made recommendations to the visitation plan, and the next month the recommendations were adopted. It happened over and over again, and now parents are serving alongside staff on the Nursing Governance Council, NICU Discharge Committee, Ethics Committee and the Patient Safety and Quality Committee.
I’m now in my second year on the Family Advisory Council and serve as chairman. We have between 20 to 25 parents at each meeting and are looking for more members. If your child has been admitted to Florida Hospital for Children, you’re eligible, and I would love to chat with you more about it. Just post a comment, and I’ll reach out to you.
It’s great to know there’s such a wonderful group of healthcare professionals who are there for our kids whenever we need them. It definitely makes me sleep better.
What is holoprosencephaly?
Holoprosencephaly is a form of cerebral palsy.
Paige and I learned that J.P. had holoprosencephaly at 23 weeks into our pregnancy during an ultrasound appointment.
It was one of those situations where no one wants to tell you anything, but they make phone calls to doctors and say they need a better look and ask you to go to another location for a better ultrasound view.
Eventually, Paige’s gynecologist broke the news and everything changed. At the time, we were at Arnold Palmer Hospital for Children and were told that Paige’s life may be in danger, and the pregnancy should be terminated immediately.
Luckily, we took some time to think about our choices, and J.P. is with us 11 years later.
We immediately began research into the diagnosis and learned about The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations.
According to the Carter Centers, there are four types of holoprosencephaly, which is also known as HPE and means that the brain didn’t grow forward and divide during early pregnancy.
The four types from mild to severe are: middle interhemispheric variant, lobar, semilobar and alobar.
Children with HPE can have small heads, excessive fluid in the brain, mental disabilities, epilepsy, endocrine problems and abnormalities in other organ systems. Facial deformities are also likely.
The cause of HPE is not known.
We learned during the ultrasound that J.P. had no facial deformities. A review of his case by The Carter Centers found he was semilobar, and doctors at Florida Hospital for Children diagnosed him with hydrocephalus, endocrine issues and epilepsy.
Families for HoPE is a great resource for parents who have learned their child has holoprosencephaly. They can be found online at FamiliesForHope.org.
Parents can also contact Nancy Clegg at The Carter Centers for assistance.
The daily balancing act
I admit it.
I don’t spend as much one-on-one time with J.P. as my wife, Paige, does.
I work the night shift at Hearst Television in Orlando and manage the websites of dozens of stations when they’re not locally staffed.
That means Paige is usually up with J.P. before me, and since I work late, she is the one that puts him to bed.
Paige and J.P. are like two peas in a pod. They love one another, and I know they enjoy each other more than you could imagine.
But I’m glad J.P. also treasures the time we get to spend together. He’s always excited when I get home, and he keeps a close eye on me from his spot on the couch.
Even when I’m not working, I’ve spent the past several years as a member and now chairman of the Florida Hospital for Children Family Advisory Council. It’s an important committee for the hospital, and there’s been a push to get more parents on other hospital councils.
Because I’m chairman, I serve on the Nursing Governance Council and recently joined the Patient Safety and Quality Committee.
I believe my work at the hospital helps me to know how to better care for J.P., and I’m glad I know many of the hospital staff members during the times when J.P. is admitted.
Sometimes I just need to take into account my wife’s guidance and advice when us two boys are left alone.
Paige had an acupuncture appointment on Friday, and J.P. had to be fitted for some hand splints for occupational therapy. I got up a little early because I wanted to get a morning run in before it was time for us to leave.
After the run, Paige warned me that I needed to move it because several things still had to be done to get J.P. ready.
I was still trying to cool down and needed some breakfast, but our pool looked really inviting after a 4-mile run. I took a quick dip and then ate.
By the time I got out of the shower, I had about 45 minutes to get J.P. washed up, diapered, dressed, in the wheelchair and in the van for the trip to Winter Park for the appointment. It takes some time.
That’s when I remembered I should have probably listened more closely to Paige’s advice.
J.P. has worked with Jorge Somoza at Combined Medical Services for many years. He’s been a huge asset to our family and has even gone to a doctor’s appointment with us when there was talk about spasticity, splinting and botox injections. He’s very knowledgeable, friendly and treats J.P. and us with a lot of respect.
The hand splints fit well, but Jorge warned that a lot of his clients have growth spurts between the ages of 11 and 13, so I’m glad we’re working toward a ceiling lift for the house — and so does my back.
I’m glad we got to the appointment, and I know Paige enjoyed her acupuncture.
I hate to be in a hurry and should remember that Paige does these things a lot more than me, and while she is J.P.’s primary caregiver, I believe I’m playing a wider role in influencing what happens at those times when the chips are down and we must trust others to provide care for our son — as well as bringing home the paycheck that puts money in the bank accounts and makes sure we all have health insurance.
By the way, I did make it to J.P.’s appointment with five minutes to spare, so I must be doing something right, and we had time to meet Paige for a nice lunch afterward before getting J.P. back home for school.
Not a bad Friday, I think.
Why blog now?
I’ve considered blogging for a long time. I’ve thought about the early years as my wife, Paige, and I tried to navigate our way through life with a special-needs child.
We’ve learned a lot as we’ve worked to find the smoothest path to provide our son, J.P., with a high quality of life after being told he wouldn’t be with us for long. We studied his hard-to-pronounce and hard-to-spell diagnosis of holoprosencephaly and the many diagnoses that come with such a brain malformation, including epilepsy, diabetes insipidus and spasticity to name a few.
J.P. is totally reliant on us for all of his daily needs. He uses a wheelchair, has a g-tube for feeding and a vagal nerve stimulator to control his seizures. He doesn’t speak in words, but makes sounds and is fully aware of everything going on around him.
There have been struggles between us when we’ve each felt one path would be better than another for him. Do you send a child like J.P. to school or keep him home? Can you go on vacation with him?
What if something happens while you’re away?
Questions. There are many questions and no real concrete answers. One doctor will say one thing, and another may say something completely different.
Making decisions can be difficult and mind-boggling.
There have been times of great worry and sadness, as well as tears of joy and happiness –sometimes at what may seem like very small victories.
I’ve learned that’s what having a special-needs child brings. You take two steps forward and three steps back.
While parents of typical children rejoice when their sons or daughters score their first touchdown or play their first recital, those with kids with special needs find happiness with simply seeing them take their first step in physical therapy or get to be taken off one of a dozen medications.
It’s a different, simpler world.
J.P. is 11 years old now. He’s in fourth grade and receives hospital-homebound instruction through our local school district. He communicates using assistive technology, and while he doesn’t take the FCAT, he did very well on the alternate assessment test for the past two years.
Believe me. The boy has likes and dislikes. He loves shows like “Sesame Street” and “Super Why,” and doesn’t like sudden noises, latex gloves and masks worn by doctors.
So why start a blog now?
Some exciting times are in store for our family. We’re adding a new member thanks to Canine Companions for Independence.
Paige and I have spent the last nine months completing loads of paperwork, getting forms filled out by doctors and therapists, sharing J.P.’s story, attending interviews and completing orientation at the Southeast headquarters of CCI in Orlando.
We learned in March that we would be attending team training in May. It’s two full weeks of classes and lectures, training with the dogs, quizzes, exams and even field trips.
We’ll be living in a dormitory and graduation will happen at SeaWorld.
WESH-TV, which is where I work, will be covering the training and graduation, and I hope to offer
additional insight with the blog and continue it afterward to help the many parents of special-needs kids easily navigate what can be very trying times.
I guess that’s why I said earlier that there are uncomfortable times for any parent of a child with special needs, but there are also times of great happiness. I believe we’re about to embark on one of them, and I’m happy to share our story with all of you.
Paige and I hope the dog will be a true companion to brighten J.P.’s world, a real furry friend, and we hope he’ll be able to help us get around a bit easier and assist with picking things up that J.P. drops and open doors to help us get him in and out of the house.
Of course, I think we’ll learn much more about what the dog is capable of in the coming weeks.
Stay tuned.
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Navigating Life's Detours 