CP Daughter Inspires Mom’s Passion for Photography

By Sara Sprague

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Being very career focused in my 20′s, I obtained my RN rather young. I went on to spend more than a decade dedicating my life to caring for and healing critically ill children in the Pediatric Intensive Care Unit, all the while dreaming of the day I might have my own child. After marrying my Prince Charming in 2008, it wasn’t long before we were expecting a precious baby girl.

Perfect Pregnancy Ends in a Heartbreaking Birth

In June of 2009, I had succeeded at a very healthy full-term pregnancy. Thirty-two hours after I was admitted to the hospital for labor, I knew something didn’t feel right. With each passing contraction I could feel that I could not advance the fetal head. After pushing for an additional one and a half hours, my caretakers realized that our daughter was not in a position for birth. She presented ear-first instead of crown of head-first. Much more concerning than her position was the discovery that her umbilical cord was completely prolapsed, cutting off her circulation and oxygen supply. I watched helplessly as her heart rate fell from 60 to 30 to 20 to reading nothing at all. I was whisked to the operating room with the OB riding in the bed to hold the fetal head off of the umbilical cord. Just before I was put under general anesthesia, I remember thinking I needed to prep myself for the possibility of waking to the news of a stillborn.

When I woke and was taken off the respirator, I was told that “Lyric,” named for her father’s musicianship, had survived.

When I was well enough to see her for the first time, I was still in a fog, but I noted abnormal newborn posturing right away. After having her evaluated by a Pediatric Neurologist, my fears were confirmed and Lyric was diagnosed with mild cerebral palsy and double left hemiparesis. In her infancy, she was not able to use her left arm/hand much at all and kept it tucked tight to her body.

Exhausting Schedule of Treatments and Therapies

All of Lyric’s developmental milestones were delayed and as she came into her toddler years, she required extremity braces, physical, occupational, and speech therapies five to six days a week.

This schedule grew exhausting fast and I felt like we had little life outside of the intensive therapies and focusing on what Lyric couldn’t do or should be doing at her age.

I decided we needed an OUTLET. An outlet that allowed me time with Lyric, that could perhaps CELEBRATE Lyric, and help me to see some positives instead of living in the perpetual state of what she “could not do.”
 

Channeling My Creative Energy through Photography

I had always dabbled in photography and found great joy in dolling Lyric up, experimenting with lenses, lighting, adding silly props and setting scenes. I took a few photos and submitted customer appreciation photos to the various children’s clothing designers from whom I had purchased. Before I knew it, I was getting requests from more and more designers for photographs.

By the time Lyric was 12 months old, I figured it was time to get some photography education under me and some professional equipment along the way. I took various classes/mentoring, began networking with area photographers, and taught myself Photo Shop – THE MOST UN-USER FRIENDLY program on Earth! As Lyric grew, so did the demand for my photography. By the time she was 18 months old, I launched a Facebook fan page to reach a larger audience. Soon after, I was requested by area mommies to photograph their little sweet peas and as it turns out, I had a bit of a knack for I, a talent I NEVER would have realized if it weren’t for the birth of my special needs darling.

Appreciating the Irony of Life’s Little Surprises

I realize my multitude of blessings now… to be a mother to a child who has come so far in her short life to become what you see today…to be married to the most incredible father and partner I could have chosen in this journey, to be a photographer on a full time basis and an RN only part time, and to be networked with literally hundreds of like-mamas who have taught themselves to sew, build websites, and pursue numerous other entrepreneurial endeavors to help them stay at home and available for their special needs children while still supporting their families.

It’s so very ironic how life unfolds with little surprises along the way. Lyric is now 3 years old and is more inspiring and amazing to me by the day. As her parent, the fear of the uncertain future can be overwhelming but I’ve had gentle hands to guide me along this path and take one day at a time… and a photo to cherish every day.

About the Author

Sara Sprague is a Registered Nurse of 10 years dedicated to Pediatric Intensive Care & Neonatal Intensive Care. After the birth of her own special needs baby, she decided to pursue her passion for photography on a professional level so that she could be more available at home. She now runs SAS Photography, a boutique baby photography company.

Margaret Jones Conference on Cerebral Palsy Forum

Do you live in Southern California? Interested in trying out XBox technology for our CP kids? On Saturday, April 20, a family forum will be held at UCLA Santa Monica Medical Center where you will be able to play with this new technology. CP Family Network has been watching this project and provided support for the CP Research Foundation and UCLA to build this technology. Make your reservation soon so you don’t miss out on this great opportunity! 

http://www.cpfamilynetwork.org/blogs/margaret-jones-conference-on-cerebral-palsy-forum

Is Summer Camp in Your Child’s Future?

By Leia Rogers

Summer is almost here and if you’re a parent of a child of a certain age, you start hearing chatter about summer camps, day camps and all fun activities typical children enjoy. But what about your child who uses a wheelchair, or has difficulty speaking or eating? Is this in his or her future?

Definitely! There are camps in many states and across the nation that serve children with special needs. At least 32 camps specifically serve children with cerebral palsy, according to Needymeds.org, an organization that helps find affordable medications for those who can’t afford them.

But how do you choose the right camp? And, more importantly, how do you know whether your child is ready for a camp experience?

Summer camp can do wonders for a youngster’s self-confidence and social skills, not to mention new skills learned from camp activities. Sure, it can be hard letting go, especially if your child has a severe disability.  But keep in mind that even though they miss you, they’re probably going to have a ball!

Choosing a Camp

The American Camp Association provides a wealth of information about types of camps and helpful tips for choosing one. Best of all, it offers a searchable database of U.S. camps. Just plug in your requirements, such as camps that serve children with mental or physical disabilities, and appropriate camp choices appear. You can even plug in cost parameters.

Another option is to call local chapters of major disability organizations about camps in your area. Many organizations publish lists of camps and can connect you with camp directors and former campers.

Paying for Camp

Of course, part of your research will involve figuring out what you can afford. The cost of camps varies widely, with some high-end special-needs camps costing thousands of dollars for multiple-week sessions.

You can help fund your child’s camp experience by applying for scholarships. Experts say to do so from December through March, because the money is gone by April or May. If you have missed the boat this year, you can start thinking of next year. The early bird gets the worm in terms of scholarship funding.

Still other sources of funding include charitable organizations and fraternal organizations such as the Lions, Kiwanis, and Rotary Clubs, all of which sponsor special-needs camps. And depending on your child’s specific special need, he or she may be eligible for financial aid from your state. Other sources of scholarships include religious or ethnic charities.

One thing to know: You usually first need to find a camp that can take your child — most of these organizations send the scholarship money to the camp in the child’s name, not to the parents directly.

Questions to Ask of a Specific Camp

After you’ve narrowed your choices, what do you do next?  Handing over your child to complete strangers for a few days or longer requires lots of trust. Don’t be embarrassed to ask a lot of questions and repeat them until you understand the answers clearly. It is important that you feel as comfortable as possible about the camp and what it offers.

I would pay close attention to how camp staff responds to what you believe your child will need for a good camp experience. Do they listen? Do they treat your concerns with respect? Are they willing to work with you? Although camp staff has their own expertise and experience to offer, you know your child and what it takes to keep them safe and comfortable.

Moving on, according to a great article on camps and children with disabilities on Disaboom.com, basic information and questions to ask include:

• Cost  Is it free (many are), is it on a sliding scale according to the parent’s income, or can the state help pay the camp’s fees? Look at all of your options. Special-needs camps try their best to make sure their camping experience is an option for any family, regardless of their income.
• Do they have a specific camping session tailored to cerebral palsy? Many camps have a wide variety of “specialized” weeks all summer, covering all the disability bases. It’s going to be a much better camping experience for your child if the session he or she attends has staff members well prepared to handle their specific disability.
• What age groups do they cluster together, and what session is your child eligible for according to his or her age? Most special-needs summer camps split up the sessions as follows: 6- to 13-year-olds, and then 14- to17-year-olds. The smaller the gap in ages clustered together, the more finely tuned your child’s camping xperience will be.
• What’s the on-site medical care and caregiver situation like? Most camps have dozens of caregivers and five or six (depending on how many campers are in each cabin) are then assigned to each cabin. Most of these caregivers are college students who are studying for some sort of medical degree and can be a lot of fun for the kids. And lastly, make sure they have either an RN or MD on-site 24/7. Many of the special-needs summer camps are miles away from hospitals or clinics.
• What about transportation? Many camps even go as far as providing round-trip accessible transportation for your child (the pick-up point usually being at a nearby disability rehab center). This service makes it easier on the parents, and also gives your child an additional opportunity to connect with the other kids attending camp.
  
  
  

Is Your Child Ready?

Every child matures at a different rate. This is no different for a special needs child.  Pushing an unwilling child to go to camp is never a good idea. Ask yourself these questions to determine whether or not your child is ready for camp:

• Has he/she been away from you before and how has that gone? Day camps offer a good “training experience” for overnight camp.
• Can he/she be soothed or comforted by people other than family members?
• In what ways does my child need to be prepared for the camp experience, for example, sleeping in a different type of bed?

Last but not least, if you are feeling anxious about the whole camp thing, try not to communicate that to your child. Children are sponges when it comes to soaking up signs of stress from their parents, so stay calm and confident. Going away to camp – even if it’s just across town – could be the best thing that ever happened to your child.

The Cerebral Palsy Family Network provides more information about cerebral palsy and interaction among parents of children with cerebral palsy on its Facebook page.