I'm a big believer that villages are an essential tool for parents of children with disabilities. As a deaf Mom who raised a late diagnosed child with hearing loss, we had very specific needs. I had to build my own well-crafted village. It wasn't easy, but it was well worth it!
Why do you need a village?
Support - Finding people who have walked in your shoes or are currently at the same stage as you can be a tremendous source of strength. Parenting always comes with a range of emotions and this is never more true than when you're a special needs parent or caregiver.
Education - Often, parents do not have the disability their child has. Upon diagnosis, it can be very overwhelming to learn everything you need to know and time can be of the essence. The right village members can make this process go faster and easier.
Guidance - Important decisions come up often and it is helpful to have a sounding board.
Networking - The quickest way to find good referrals for programs, therapists, doctors, etc. is to check with members of your village.
Friendship - Having people to lean on, laugh with, cry with and celebrate the wins with keeps you mentally healthy.
Who should be the village members?
Here are some suggestions. Be sure to add the various types of respected professionals you interact with in regards to your child.
Teacher of the Deaf
Speech Language Pathologist
Auditory Verbal Therapist
Early Intervention Specialist
Cochlear Implant Center
Public or Private School
SEPTA (Special Education Parent Teacher Association)
National and Regional Parent Organizations
I found the Alexander Graham Bell Association for the Deaf and Hard of Hearing and the Children's Hearing Institute to be very helpful village member organizations. Hearing First is another good resource for parents.
How do you build your village?
Networking is key.
Seek out friends and neighbors who may know other parents of children with hearing loss or other special needs.
Contact your local school district.
Research and contact schools for kids with hearing loss or other special needs.
Ask all medical, educational and therapeutic professionals you work with.
When do you start building your village?
The sooner you start building your village, the sooner you will have more tools and good professionals to support you in your efforts of raising your child. A solid, well-built community will be of tremendous benefit to you, your child and your family.
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Have other ideas for building your own community? Leave a message in the comments below. We'd love to hear from you!
Paula Rosenthal, J.D. (she/her) is deaf and uses cochlear implants to hear. Her husband and one of her three children also use cochlear implants. Paula is an award-winning advocate for people with hearing loss and their families. She blogs at PaulaRosenthal.com and is available for speaking engagements. To contact her, please send an email to firstname.lastname@example.org.
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