For Fellow Parents

By Heather Withrow
Last edited 1/25/2023

The following is something I've developed over time when asked about resources for parents of deafblind children.  It's a working piece that has been edited several times.

Orion's degree of deafblindness is rare among deafblind children- he is profoundly deaf and does not have any usable vision.  He has a little light perception in parts of only his right eye.  Your child may have some vision, or a different level of deafness.  This list is from the perspective of a mom of a totally deafblind child:

First thing to do

Well, not the actual first thing which is kissing, hugging, and bonding with your child, but the first thing after that:

The #1 thing parents need to do to get support, information and resources for their child is contact their state DeafBlind project (office). I got in touch with the awesome people at Maryland's CBSS (Connections Beyond Sight and Sound) for resources and support for Orion. 

To find info for your state, check out where to go via: http://nationaldb.org/members/list?type=State+Project

Early Intervention

Each county in the USA has early intervention available, it may also be called an Infants-Toddler Program.  Your child's pediatrician should be talking to you about this and giving you contact information.  If not, you can Google it, contact them and get the intake application process started.  Your state Department of Education and state DeafBlind project would have this information, too.

Don't wait until your child is at an age you think is old enough for therapy.  Get him/her evaluated and they can tell you.  Even 3-month-olds are not too young for early intervention.

I tried to get county early intervention ready before Orion was born and I was told to wait.  Luckily staff from Maryland's Deafblind project was happy to meet with me anyway. Sure enough, around 2 weeks after the enlightening and inspiring meeting, Orion was born!

Like the state Deafblind projects, early intervention can help keep an eye out for workshops you could take to learn a little bit about resources or strategies for your child.  Luckily our kids don't roar through their childhood overnight so there is time to do a little here and there as our kids grow up with us.

Online DeafBlind Resources

I have a list of favorite online resources to the right on this blog titled "Links of Interest".  But here are three of the places I discovered during Orion's early days.

National Center on Deafblindness: http://nationaldb.org/. 
This website is loaded with information on DeafBlind people from birth to 22 years old. DeafBlind Child Count, state DeafBlind project contact information, articles on topics including communication strategies, educational supports, interveners, etc. The NCDB is federally-funded.

I love watching online videos, so it's delight when they're available on the topic of Deafblind kids.  Two I suggest checking out are:

• Washington Sensory Disabilities Services (WSDS) has online resources for teachers and families of DB kids (http://www.wsdsonline.org/).  Plenty of videos to check out!  Some text may also be available in Spanish.
• I started visiting Perkins Webcasts before Orion was born (when I realized he might be deaf, too): (Now Perkin's videos can be found via this updated link: https://www.perkins.org/resource-type/video/  I truly appreciated these webcasts and still am hungry for more on the topic of Deafblind children by the way of Perkins, state DeafBlind projects and fellow families! 

Parent to Parent Connections

There's something reassuring about sharing your experiences with another parent and getting that knowing nod of agreement! 

Look for (or ask that there be) a gathering of families who have a deafbind child or adult in your state or province. Those are wonderful!  A couple examples: Texas has a weekend workshop retreat for families at a gorgeous camp; British Columbia has regular family-meeting opportunities every month in the Vancouver, BC area.  As simple as a day or afternoon of activities and a BBQ would be good. I would consider two families meeting up a great start!

Check out the NFADB National Family Association for Deaf-Blind (http://www.nfadb.org/) They're also on Facebook: https://www.facebook.com/NFADB/

Hands & Voices Deaf and Hard of Hearing Plus

A private Facebook group for interaction among parents and family members of Deaf or Hard of Hearing children and adults with additional disabilities. https://www.facebook.com/groups/deafhardofhearingplus/

And there's blogs!  You can browse my blog, "A Mom's Musings", here at www.OrionTheKid.com as well as look over to the right and find the sidebar of links to the blogs I enjoy visiting.  Most of them have to do with deafblind children, people, and activity ideas.

Communication

Deliberate efforts for communication should start the day your deafblind child is born.  

Hearing babies are spoken to, Deaf/HH babies are signed to.  Children of Deaf Adults are signed to regardless of how their ears function.  You don't have to have an extensive knowledge of sign language to tell your baby you love him.  Give him hugs, kisses, hum on his neck, caress his cheek.  Start with a few signs, perhaps ten signs of the most common words you find yourself using.  

Visit my page dedicated to communication.

Hearing Aids

I've been asked about cochlear implants, too.  CIs may or may not work for deafblind kids because some kids' inner ear may be differently developed that it won't work, thus no surgery will take place. There's no guarantee of a desired hearing level.  Even if they respond to sounds at 20 to 25dB like Orion used to do with his CIs on, they're still listening through a "broken system". Orion has not worn his processors since he was 34 months old. 

People can read about our difficult decision for Orion to receive implants at: http://hexwit.blogspot.com/2011/08/cochlear-implant-it-is.html

If you think about it, early deafblind sensation Helen Keller, who had an extraordinary personality herself, did not have listening aids back in her childhood. (I say early deafblind because there are so many living deafblind sensations among us today!)

Play!

Playing games with your child is one of the most important things you could do for your child every day.  It is fun, the both of you will laugh and simple games is great brain exercise for your child. Not only that, it is developmentally beneficial to for our children to become curious, motivated and to interact with people, objects and surroundings.  I have heard an Active Learning workshop presenter tell us all that a kid's job from birth to 5 years old is to PLAY! I would like amend that we put no age limit on playing because once the developmental benefits are being met, there's still the social and emotional benefits to enjoy!

For example, if your child enjoys tickling you can start at his toes, crawl your fingers up to the knees... then the hips... slowly creep up to the chest and tickle your baby.  This develops anticipation and prediction skills of what's going to happen next based on prior experiences.

After the most famous five senses, there are two more that are not as well-known. They are the vestibular and proprioception systems. David Brown wrote a wonderful article on Proprioception: The Forgotten Sense. When I learned more about the proprioceptive sense, it dawned upon me why playing robustly with Orion truly benefitted him.

Take it one day at a time (I'm still telling myself this!)

It may be a lot of information processing and questions storming around in your mind and conversations but parents deserve to take time for themselves. Just like a child grows with you, the information will, too. What I know today is from my years raising Orion.  I'm still learning!