Becoming a Patching Parent: Advocacy, Support and Self-Care by Guest Author Carrie Groleau – Children's Eye Foundation of AAPOS
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Becoming a Patching Parent: Advocacy, Support and Self-Care by Guest Author Carrie Groleau

 

Becoming a Patching Parent: Advocacy, Support and Self-Care

Part Four
 

The Children’s Eye Foundation is grateful to have parents willing to share the knowledge they’ve gained while navigating the world of childhood vision. A very big thank you to Gus’ mom, Carrie Groleau for writing this blog series for CEF, which has been endorsed by pediatric ophthalmologists on the CEF Editorial Committee. We know you’ll find her wisdom and insight incredibly helpful on your successful patching experience!

If you haven’t read Part One,Part Two, or Part Three, be sure to check them out!
 


 

Advocacy and Patching in Public

I have always been very intentional about resuming life as normal during the hours my son Gus is wearing his patch. We patch while grocery shopping, running errands, visiting the library, playing at the park, swimming, going to birthday parties, and getting together with friends. I strive to normalize patching for my son and his peers as much as possible, and hope that in doing so, Gus will feel more confident in himself and in explaining his need to patch as he grows older. Patching in public also helps keep Gus distracted and makes our patch time go by a little faster. Patching in public isn’t always easy, but I believe it is important to do so.

When patching in public, be prepared for others to notice. People are naturally curious as most have never seen an infant or young child wearing an eye patch before. Many will assume the patch is a bandage and feel concerned for your child. Some people will stare, comment, and ask questions. Have a few responses planned, so you’ll be prepared for moments when your child’s patch is addressed in public.
 


 

Here is a simple answer for explaining why your child patches: “_________ wears a patch over his/her stronger eye to improve vision in the weaker eye.” You may even include an enthusiastic, “…and it’s working!” at the end.

The amount of information you share about your child’s reason for patching is entirely up to you. It’s also okay if you don’t want to talk about your child’s vision issues at all. When others point out your child’s difference, remember that your child is watching and listening, too. How you react to comments and questions about patching sets the example for how your child will feel and react as well. If you are not concerned about the social aspects of patching, it’s unlikely your child will be either. Patching is almost universally accepted by children in younger grades, and can be a positive experience with respect to the increased attention your child will receive.
 


 

I have found awareness t-shirts to be really helpful when patching in public. We get a much more positive and empathetic response when Gus wears a shirt with a patching message on it. Instead of being stared at or asked questions, we receive smiles and hear words of encouragement. It let’s us engage in conversations with others who feel welcome to share their personal patching experience.
 


 

Patching in Childcare and School

Being a patching parent means advocating for your child. When preparing to send your child to daycare or school, be upfront about your child’s vision needs from the beginning. Provide childcare providers, school administrators, and teachers with a note from your child’s pediatrician and/or pediatric ophthalmologist to explain your child’s condition, the reason for patching, and the amount of prescribed patching hours that will need to be completed at school. Schedule a team meeting at the start of each school year to establish a plan that ensures all patching hours get completed and to put necessary accommodations in place to help your child be successful. Ask childcare providers or teachers to keep track of patching hours with a time log that goes home each day or at the end of each week. Share any special tricks or reward systems used at home to encourage patching compliance and make sure everyone is on the same team!
 


 

504 Education Plans

Once your patching child enters the public-school system, he or she may be eligible for a 504 Plan, which provides necessary support and services for students who need special accommodations. While patching as treatment for amblyopia or strabismus does not mean your child has a learning disability, they may benefit from specific support to be more successful in school. Examples of 504 accommodations that patching students may receive include:

  • Preferential Seating: Request your child be seated near the board or wherever there is the least amount of visual obstruction. If light-sensitivity is an issue, request your child also be seated away from windows where the sun shines through brightly.
  • Extra Time: Your child may require extra time for in-class assignments that involve reading and writing.
  • Enlarged Font When Needed or If Requested (usually not an issue until older grades)
  • Better Desktop Lighting
  • Audiobooks
  • Tablet or laptop synced to the classroom’s Smartboard or projector
  • Hat and Sunglasses Outside
  • Small Breaks as Needed Due to Eye Strain
  • Small Group Testing for standardized assessments
  • Reduced Homework: fewer math problems or reduced reading requirements as homework increases in later grades and/or if eye strain becomes as issue
  • Notification if Anyone in Class gets Conjunctivitis (“Pink Eye”)
  • Accommodations as Needed in Physical Education class (due to depth perception issues. You may also choose to have your child remove the patch for P.E.)

 


 

Remember that communicating with your child’s teacher and school administration is key in providing a network of support for your child.
 

Parent Support

One of the most important pieces of advice I can offer to parents of children who patch—and to those with other health- or vision-related issues—is to talk with other parents facing a similar situation. There are numerous support groups on Facebook that have helped me feel connected throughout this process and continue to serve as reminders that my family is not alone on this journey. Here is a list of active support groups on Facebook for parents of children with vision needs:

  • For Little Eyes – A Group for Parents of Young Kids in Glasses
  • Children with Congenital Cataracts
  • People with Persistent Hyperplastic Primary Vitreous (PHPV) Unite!
  • Pediatric Esotropia / Exotropia / Strabismus / Amblyopia / Cross-eyed Awareness
  • Aphakic Kids
  • CONGENITAL CATARACTS
  • MAPS MOMS Micropthalmia, Anophthalmia Parent Support
  • Congenital Glaucoma (Leightons Legacy) X
  • Families of a Child with Retinoblastoma

 

Remember that your child’s ophthalmology team is part of your support system as well. Don’t hesitate to reach out to your child’s doctor with any patching questions or concerns.
 


 

Self-Care

I understand what an emotional and physical toll being a parent to a patching child can be, and I know how easy it is to lose oneself in the process. Parenting is hard enough as it is. Add in patching for multiple hours every day, and well… it’s even harder. Patching is challenging for everyone involved, so give yourself some grace. You may not reach your prescribed hours every single day, but you can try your best. Every hour of patching you achieve will make a difference in your child’s eyesight for life!

Remember how vital your role is throughout this process and pat yourself on the back! You deserve to reward your efforts as well, so treat yourself from time to time. Whether it’s eating a piece of your favorite chocolate when patch time is over, practicing yoga, going for a run, painting your nails, speaking to a friend or counselor, or taking a solo trip to Target, find something that makes you feel good about yourself and do it! Self-care isn’t meant to be self-indulgent. It’s meant to help keep your mental, physical, and emotional health in check. Don’t forget to take care of yourself!

Finally, make patching positive and be a proud patching parent! Take photos, record your successes, and feel proud of the work you are doing to improve your child’s vision! When patching is a struggle, take a deep breath, keep calm and patch on. One day your child will thank you!
 

If you’d like to learn more about Gus and our daily adventures in patching, follow us on Instagram @patchwithgus where I chronicle our vision journey and provide additional patching support.

 


 

Enter our Giveaway!

CEF is so excited to offer our first ever giveaway! Sign up for the newsletter from the Children’s Eye Foundation or like us on Facebook for your chance to win a fabulous patching prize pack! Each action gets you an entry into our drawing. Giveaway winner will be selected on May 31st!

Our Super Patching Giftset includes some amazing items to help you and your child on their patching journey. Total approximate value is $300

  • Hardback Copy of Jacob’s Eye Patch by Beth Kobliner Shaw & Jacob Shaw
  • Patching reward poster, coloring and activity book, My Patching Booklet, and 1 box of unisex adhesive patches from Ortopad USA
  • Complete adhesive patch collection from See Worthy Patches = 4 boxes of 50 patches for 200 total patches
  • Framehuggers patching gift set including custom Framehuggers fabric patch for glasses with color and design of choice, Headhuggers glasses retainer, and patching reward game
  • Eye Power Kids Wear awareness t-shirt of choice with accessories pack
  • Custom patching doll from The Giggle Worm on Etsy
  • Parent gift from Carrie Groleau @PatchWithGus, including patching reward stickers from PaperLemonadeCo on Etsy

 

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