myFace patient Nathaniel Newman and his family

Navigation Tools for Back-to-School

Since I started last year as Director of Family Programs at myFace and as a former patient myself, I have had parents reach out to me expressing concern for their child entering school for the first time. How will they handle the stares, the teasing, and the bullying? Will they make friends? As parents, what should we do to help make the transition a smooth one? As the school year begins, I thought that I would reach out to Russel Newman, father of Nathaniel, who has Treacher Collins, for his insights and advice. I hope you find this helpful and I welcome any thoughts you may have about your own experiences and what has worked for you.

Starting a New School or New Grade:

The trauma of starting a new school, a new grade or even just a new classroom for any child is scary. For children with facial differences it comes with the added stress of knowing a new group of kids will stare, point and may even say hurtful things. As parents of children with differences, we have to do all we can to ease this transition while at the same time affording our WONDERful kids as much “normalcy” as possible. Remember, it is our kids that are best equipped to navigate these situations. I feel it is our job to create a situation that affords the best opportunity for a “trouble free” transition, but then we must get out of the way and let our miracle kid chart their own course.

Easier said than done, right?!!! Well, over the past 6 years of school, my wife and I have come up with a few tricks, if you will, to help Nathaniel chart his course. Here you go:

    1. Early engagement with school officials and support.

I reach out to the school principal in July/August to start discussions with administrators, teachers, school nurse and social workers from the district. We discuss things like nursing care, teacher assignment, any upcoming surgeries or any other issue that would impact Nathaniel’s school year.

    1. Write to parents and classmates.

Every year Nathaniel has been going to school, with the help of the school administrators, we have written a letter, from Nathaniel, to the kids in his school. (click here to read Nathaniel’s letter!) The schools have always been willing to send this out. We include a picture of Nathaniel. It takes away some of the shock factor but more importantly affords parents an opportunity to discuss Nathaniel’s differences. Hopefully, with the help of books like Wonder, and this type of letter, we have created an environment that is less “hostile.”

    1. Make public outings a priority.

Try as best you can in the summer to spend time at places where future classmates will likely be such as movie theaters, playgrounds, indoor arcades and the like. While there may be an urge to get away for the summer and spend time vacationing elsewhere, make sure you leave ample time to be in and around your community. The ice cream/frozen yogurt spot is a favorite of ours.

    1. Talk to your child!!

Goes without saying right? Well this is key in the “Chart Their Own Course” category. For years, I have walked in the first day of school with Nathaniel and addressed his classroom about what makes Nathaniel different. This year, as Nathaniel entered 5th grade, and we moved 3,000 miles to a new city, I assumed he would want me to do the same thing. Thankfully at an early meeting with teachers, I asked Nathaniel if he wanted me to do the same thing. His response was telling: “No Dad! This year I want to do it myself” My point is to not assume your son or daughter needs something without asking. Our kids, even as young as 1st and 2nd grade, are far more aware of their wants and needs than kids of a similar age who have not faced these challenges.

    1. Friends: the few and the worthy.

Be prepared for the inevitable. It has proven itself for six straight years now: Nathaniel does not have a huge group of friends. But, even better, he usually has one or two incredibly deep and strong friendships. Pat Chibbaro, Pediatric Nurse Practitioner at the The myFace Center (formerly known as the IRPS), told me many years ago this would be the case. Thus, we should ourselves have the right perspective and expectations for our child’s school year. This was hard for me as a parent to deal with when Nathaniel first started school. Why wasn’t he invited to EVERY birthday party? Why didn’t he talk about more than 1 or 2 kids? Were the other kids mean to him??? NOPE. It’s just that Nathaniel was able to recognize the few really BIG HEARTED and WONDERFUL kids with whom HE wanted to connect. Be prepared for this and embrace it.

Hope this helps you and your child have a wonderful experience this coming school year! As always I am available to answer any other questions you may have.



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