BY KRISTIN HUTCHISON

August and September signify the beginning of a new school year. When we were kids, we felt the energy abuzz as we prepped for the new year ahead with fresh school supplies and new outfits, fears and excitement for a new teacher and new friends, and the anticipation of new activities on the horizon. It is natural for parents and teachers like myself to feel that similar energy. However, for parents of children with complex medical needs,the excitement can be clouded by additional stressors. Whether you are sending your child to school in person,or engaging in home based , or hospital instruction, my guess is that you have found yourself wondering at least one of the following questions:

• Will the new teacher “get” my child? 
• Will my child have all of their medical and nutritional needs met? 
• Will sending my child to school in person expose him or her to a variety of seasonal illnesses?
• Will my child benefit from school? 
• Will my child make friends despite his or her unique conditions? 
• Will my child be too socially isolated because he or she receives home instruction? 

As a teacher of students with complex medical needs, I wonder about some of these very questions as well. You may believe that the world sees your child as “hard to engage” or “hard to understand” for many people who work with them. These thoughts are completely understandable and I have heard them time and time again from the families I have worked with over the years. But I can assure you of one thing: Teachers WANT to get to know your kids. They WANT to engage!! 

As parents, you are the biggest advocates and cheerleaders of your children. You often need to be the voice for your child, especially if your child is non-verbal. I would encourage you to start by communicating to the new teachers everything your child likes or dislikes. What motivates him or her? What are ways that you know your child is content or happy? How do you know if your child is upset? How do you know if your child needs something? Since many of our kids communicate in different ways (gestures, body language, facial expressions, verbally, with AAC Devices, etc), it is important for you as a parent to list each mode of communication complete with examples so teachers can better know and then better teach your child. Even if you do not think it is relevant to the school or educational environment, tell the teacher anyway! You never know what can be incorporated into lessons or activities at school. Does your child explode into giggles when you drop things on the floor accidentally? Tell the teacher! This activity can be incorporated into read aloud activities easily and promote communication opportunities.

Ultimately, the parent is the expert on their child. Tell teachers your secrets for meaningful connection with your child. Every child, no matter the complexity of their conditions and medical status, can communicate, and already is communicating–it just may be that the ways they are communicating are subtle and unique. A great teacher, just like a great doctor or medical provider, will turn to the family as the best interpreters of what their child is “saying,” and will observe closely and patiently to read those same signals from the child themselves.  

As a teacher, I enjoy the challenge of incorporating student interests and adaptive equipment. So many of the students I have worked with over the years enjoy being read to, including music and funny sound effects in instruction, slapstick jokes and the playful use of sarcasm, and oddly specific topics. It is such a joy when everything can be combined into one lesson! Again, I know that you may not think that certain specific or unique child interests could be relevant to school but they contain a special magic! So many of my students have found “potty humor” to be funny. Farts and poop jokes are pretty much always a hit. This silliness helps to provide opportunities to build rapport between school staff and students. Also, toileting is a major part of children’s lives. Did you know there are so many books and games out there in the world about farts? AND they are educational! I have built whole lessons around the gastrointestinal system complete with AAC devices that say “ew gross” or “that’s so cool” and I even have a switch-adapted fart machine. While I initially get strange looks from coworkers and parents, more times than not, those strange looks quickly change to smiles and laughter when they see how successful these tools and approaches are in helping a child “come out of their shell.” Seeing kids engage in activities is so meaningful and special, no matter what the topic may be. 

A great way to relay all of the specific information about your child is through an “All About Me” page. These handouts are familiar to teachers, as they are commonly used in the schools at the beginning of the school year. In the worksheet, include interests, likes, dislikes, sensory preferences, modes of communication, and whatever else is relevant to your child. These documents are also helpful for the medical teams working with your child as well. I have created them for doctors, child life specialists, and therapy teams. I have found that these documents help communicate important information when parents are not physically present or are unavailable. They also help at times of transition.

Transitions are difficult, and the back to school season definitely can be as well. Collaboration between families and the educational team is absolutely critical to supporting a positive, productive start to the school year, and great teachers are ones that will welcome that partnership. This also applies to medical teams. Remember, every child is a learner with their own strengths, challenges, and goals, all kids benefit from meaningful school experiences, and there are always ways to maximize potential no matter what the circumstance is! Lean on your support systems and school staff when needed. It takes a village!

Kristin Hutchison, MS. Ed., is a special education teacher with specific expertise in supporting students who have severe and multiple disabilities and complex communication needs, and in augmentative and alternative communication (AAC). She additionally serves as adjunct faculty at Hunter College, CUNY, in the graduate special education teacher training program. Kristin is the product of a NICU Nurse mom and a special education teacher dad, and since childhood she has had a passion for connecting with and providing positive opportunities for diverse children with complex medical needs. When not working, Kristin likes to spend time with people who “fill her up,” reading, watching the newest TV series, going to concerts, and cuddling with her fluffy dog, Ralphie.