I had taken twenty classes before he entered school and then once he started school, I took classes at a school for the deaf for eight years, driving back and forth up there. I think it’s fair to Troy that if he’s in the house with people that someone should be there to communicate with him. As we continued to grow and they continued to give us classes and stuff, the kids also picked up sign language. Everybody in the house can communicate with Troy. As I learned sign language I also taught the boys.
Support and Friendships
We met a lot of friends, well now they’re friends, we met a lot of families with kids who have hearing loss, even one in the next town over from us and we’ve built a really nice friendship with them and it’s nice to just get the families together and go out with them and go to amusement parks and out to dinner. It’s nice to have that collaboration. It’s nice to just get together and share our resources or when we’re having an issue we get together and talk about it and they throw us some ideas and it’s nice to have that support.
Get a support system. These support systems also help to educate us and our families who don’t know anything about his hearing loss…I know with my parents, they’ve had limited access to people with hearing loss and so I tell them, just act normal, you don’t have to go out of your way to communicate with him. Just talk to him like he’s a regular child. He’ll pick it up no matter what. Yes he has a hard time hearing but it doesn’t change anything else about him. My mother, every time she was around him, she would just yell and he would start crying because it was too loud for his hearing aids. So it was just to educate them too.
Other People’s Stories
When Stephanie was diagnosed there was a hearing impaired student teacher in my boys’ elementary school and he was in his early twenties and he was completely oral. He happened to live in our town so he gave me his parents’ number and they spoke to me for hours. They told me their story. Hearing the story was helpful. It gave me a lot of hope because I had this model of somebody with a very comparable hearing loss who spoke very well. I think that kind of support is really helpful especially as they’re growing and acquiring language and you see all these healthy kids who are effortless for words.
Connecting With Other Parents
Having a support group is very important. We just started a parent support group back in June for parents of deaf kids in our city and that’s worked out really well because sometimes you think, “I’m the only one that has a deaf child.” But now that I’ve done this group and have met so many parents and so many kids that are deaf I feel more supported. It’s very important to be able to meet other parents and share our experiences with each other. Also maybe someone has a question that another parent might know the answer to. We sometimes bring in guest speakers from different organizations to share with us new information about resources. That’s important because not all cities have services, but there are people that want to help so I think you have to build a community within yourself to educate yourself as a parent. I think that although I may never know what it feels to be deaf, I definitely know what it feels to be a mom of a child who is deaf. And when you meet somebody else you say “well ok I’m not alone its not that bad; there’s help, there’s people,” I think that having a support system is very important, because it can be a very lonely road.
What I thought was really wonderful support for me, was the Parent Infant Group program. It was a huge support because it’s run by deaf adults and they could tell you some of the resources out there. They run a parent support group part of the time – while your kids are off playing, you go to a meeting with a social worker. I thought that was really, really helpful.
My Child’s Audiologist
I think my audiologist has been huge. I call her for everything. Then, at the school for the deaf they know everything too about hearing loss, FM systems, tips, and help. People like that who deal with deaf and hard of hearing kids everyday know what you should do and can help you and want to help you. They care. And also the audiologist who does their hearing aids. Everybody has a little bit of information for you. You should really use those people. If you use your resources it’s the best that you can do.
The Audiologists Have Been Very Helpful
I have to say talking with the audiologists really helped me a lot.. We dealt with two primarily who have been with the girls now since they were really little, they’ve told me about websites and told me about different things I might want to look in to. I think they were a big resource for me.
Internet Websites
When he was three or four I came upon a website on the internet that, by far, has been the most valuable resource we’ve had through the years in terms of Chris’s care, my learning about products and services out there, legal issues, educational support, and parent groups. It has provided unbelievable resources. That is a website for parents but because I communicated with them and they have kids, Chris has children to play with. It has opened up doors for me.