H&V Guides: About More than Deafness
By Darlene Freeman, Maine H&V
When I first learned about the H&V Guide by Your Side program, I was immediately intrigued by the concept of a parent who may be a little further along in the journey, (and, in my case, quite a bit further along the journey) supporting another family through experiences they are having with their child who is Deaf or hard of hearing. I imagined I would share my strategies for making choices for our own daughter as they came up with lists of pros and cons of whatever we needed to decide at the time (and there were many of those decisions). I would tell them how we found ways to increase language all around her, how we explained everything to family members so they would understand what she needed from them for access, and how we prepared her to participate in community functions. I would help them through difficulties with friends and share encouraging words I used when my daughter didn’t want to be different than everyone else. I would give them ideas of questions to ask in IFSP/IEP meetings and remind them to make the meetings about their child and not the professionals’ agenda. I would share all I know about deafness so they would be educated as best they could be so they would feel confident in advocating for their child.
When I accepted the job of Parent Guide, I find myself doing these things, but the role of Guide has become so much more.
I learned that before a family can worry about a language-rich environment at home, they have to have a home and food on the table. I learned that in order to educate other family members and the community about what their child needs, they need to overcome their anxiety/depression that were there long before their child was born and I became their Guide. I learned that sometimes paperwork and phone calls about other things happening in the family need to be supported before paperwork for audiology appointments or services can be done; sometimes other things have to take priority. I learned what a toll all of their decision making, multiple appointments and making sure their child (children) have what they need puts on a marriage and the family unit. I learned that sometimes the best thing I can do for a family is remind them it is okay to take a break and just be…be a family, do something fun, leave the dishes in the sink, skip the veggies at dinner and don’t worry whether you have given a word or sign to every item in your home, and, if you need to, call the therapist and tell them you can meet, just not today. I learned that sometimes just giving that permission relieves the stress and the families are able to get back to what needs to be done knowing that they can do it when they are supporting each other as a family! I have learned that I have limitations in the support I can give and to help families reach out to specialists when I reach those limits. I have learned that everyone in the family needs some encouragement now and then, spouses, siblings and extended family. I have been reminded that we had a lot of these struggles too, and some of those I have forgotten now but remember again that we are 22 years down this road.
I have hope that the families I guide will need to be reminded of how hard parts of their journeys were when they are 8, 12, 20 years down the road. I hope they realize they were enough. They could do this hard work and it was all worth it to see their whole family thrive. I see the seeds of leaders in my new families who will become the future Parent Guides that tomorrow’s families will need. ~
Editor’s note: Freeman is the Guide By Your Side Coordinator and a Parent Guide with Maine Hands & Voices.