Over the years, I have both volunteered and worked as a teacher’s aide in various classrooms. I have several relatives and friends who are special education teachers.
Many children in special education programs have genetic conditions and I am always surprised at how little many teachers know about genetics. This prevents them from understanding how they can work with their students in the best ways. This prevents them from understanding what sort of medical issues each child might have and how to watch for red flags. This also causes miscommunication between parents and teachers.
When I am able to explain what a genetic condition is to a teacher, I see a difference in their teaching approach. They become more accepting and set realistic goals their students can achieve. Those goals are usually set higher.
Teachers continue to see the child for who he/she is and do not allow the genetic condition to define their student. Instead, they have a better understanding why certain behavior or medical issues may arise and are more prepared for those issues. This in turn creates less stress for the student and parents.
This also leads to improved communication between parents and teachers.
Parents enjoy being able to talk openly about concerns to someone who understands and knows their child.
Teachers also have a lot to teach us genetic professionals, I know this from personal experiences.
Should genetic professionals explore ways for making resources about genetics more accessible for teachers? If so, how?
The DNA Exchange 
This is a topic I’ve spent a lot of time thinking about. My mother is a special education teacher and I myself was involved with special education and respite care for years. My mother and her colleagues have always been excited to ask me questions and learn about the disorders affecting their students.
On the other side of things, it is not uncommon for students with special needs to come to attention through the school system. Many of these kids never receive a formal diagnosis or are only taken to a specialist at the urging of the school.
Is there a way to integrate genetic counseling into the education system to serve both of these causes?
Leah,
Thank you for your comment. I do think there is a need to somehow integrate genetic counseling/awareness into the education system.
Do you have any thoughts on how to do this?
I know many school boards (or at least those I’m familiar with in Ontario) employ social workers and psychologists as consultants. It might be interesting to look into how this model might be adapted for genetic counseling. Perhaps a genetic counselor could be employed by a school board and consult with teachers, students and parents on a by-request basis or when a student is identified as having special needs. Other ideas?
I think it is within reason as a GC to offer to attend Individual Education Plan (IEP) meetings for patients. I have had parents express interest in this. It would allow a GC to meet with parents, teachers, and other individuals involved in a patient’s care. A great opportunity for the teaching staff to ask questions about the syndrome that may be affecting a child, and learn about some of the behavioral aspects, and learning difficulties that may be associated. I think this is especially helpful for parents that may have difficulty with advocating for their child or all of the nuances that go along with a genetic diagnosis. It’s another thing to add to a GC’s plate but beneficial in my mind!
Leah and Cassie,
These are great ideas! Do you know of any genetic counselors who currently do things like this?
Our genetics division has provided genetics clinics for our local school district for over 20 years. At this year’s ACMG meeting I presented a poster about our experience. We see students that have been referred through school nurses. We provide diagnoses, medical recommendations and educational interventions. At every clinic multiple school personnel attend including nurses, physcologists, counselors, social workers, teachers, therapists, and administrators. The clinic provides diagnostic and treatment recommendations for the student, genetic counseling for the family and as an added bonus it is a great teaching tool for school personnel. If anyone would like to get more information, I’d be discuss the details.
I would love to hear more about this. It’s so wonderful to hear that this is being done.
Katrina, whereabouts are you located? if possible, could you please send me some more information on this? I am a GC student and I would LOVE to learn more about opportunities and needs for this once I graduate. This is wonderful info, thanks for sharing.
I agree that there is a great potential collaboration between educators and genetic counselors. I know I have learned so much from working with educators about pedagogy and teaching style.
We have had several conversations in my office about the integration of GCs into the special education arena. I think that one of the biggest limitations is the legal and confidentiality issues that come with IEPs and discussing individual students. Many times, even the educator working with the student, is not informed of the student’s specific diagnosis.
I would definitely be interested in hearing if any GCs have attempted to become involved with school systems and what, if any, roadblocks they have hit.
Perhaps there might be also be a place for us in educator professional development, in more of a broad context, rather than discussing specific students?
Perhaps offering outreach presentations to local school districts or special education conference would be somewhere to start?