The special needs journey is not one I planned to take . . . but I sure do love my tour guide”
I have often wondered what lures each of us as parents or family members to certain support groups, organizations, websites, courses, and other learning and support opportunities, as we search for resources to help us on our special needs journey. But I think I know the answer now. It is our tour guide—our child—who leads us to the information and people who can help us the most.
In the beginning my son was too young to lead me and so, like a fish out of water, I tried desperately to locate information on my own. I would talk to anyone who would talk to me about disabilities. I attended multiple forums and trainings, and joined support groups. Some were helpful and some were not. At times, a group or resource I found would feel like a good fit. At other times, it was so wrong I had to figure out a way to graciously remove myself.
After a while, in over to avoid feeling overwhelmed, I narrowed my search for resources solely to items on my son’s etiology. If it didn’t say “deaf-blind,” I was not interested. In doing this, however, I alienated myself from incredible information that would have enhanced my knowledge.
Eventually, I had to come full circle and it was because of my tour guide that I did. As he was growing, maturing, and transitioning, Hunter was learning about himself and finding his identity. His searching assisted me in finding the right resources, support groups, associations, and coalitions that could provide the supports that were best for him.
As I continue to be led to appropriate resources by my now young adult son, I feel a responsibility to share any valuable items I find. Recently, I’ve carefully studied two learning modules developed by the National Center on Deaf-Blindness (NCDB). If you are a parent of a transition age or young adult child with a disability—even if your child is not deaf-blind—you will likely find them extremely helpful.
The two modules I’m recommending, one on self-determination and the other on transition to adult life, are part of a set of 27 modules called Open Hands Open Access (OHOA) Deaf-Blind Intervener Learning Modules (moodle.nationaldb.org). The OHOA Modules are a national resource designed to increase awareness, knowledge, and skills related to intervention for students who are deaf-blind. Originally intended as resource for intervener training programs, the modules very quickly also became recognized as an excellent resource for parents, educators, and other professionals. They are available for free online self-study.
Module 16: Self-Determination
Module 16 consists of four activities on the following topics:
- Self-Determination and Opportunity
- Self-Determination Skills
- Providing Choices During Daily Routines
- Self-Concept and Self-Image
These are important factors that must be considered and implemented regardless of our child’s disability. We certainly know as parents that being self-determined means making things happen in one’s own life, instead of always having our choices and actions determined by others. Our children have the right to a positive self-image and personal growth.
Module 24: Transition into Adulthood and Community Life
Module 24 includes these learning activities:
As parents, we want fulfilling and happy lives for our children, where they are surrounded by family and friends and embraced by their communities. This module describes how opportunities to fully experience life and follow their own abilities and interests, will allow our young adult children to be the guides of their own transition journeys.