I am currently excitedly working with our local deaf and hard of hearing agency to create a parent support group. You might remember that I started the Ears to Hear Club a few months ago, and although I've made a few connections, it hasn't gone very far. So I'm teaming with this agency to expand and provide educational opportunities for parents of d/hoh children.
We met this evening to plan our first meeting and talk about our ideas. One of the ideas is to create a brochure for hospitals, doctors, audiologists, etc. with local information for navigating the world of hearing loss. That's something that I never had at my disposal, but could have benefited from greatly. So I got to thinking... if I could have been given a brochure on the day Lucas was diagnosed, to help me get started on this journey, what would it have said?
First, there would have been an entire rack of brochures to choose from, categorized by the parent type, and I would have grabbed the one for cynical parents. It would have been in a step-by-step list format, and gone something like this:
*Please remember that this would have been the brochure for ME,
not necessarily you or him or her, just ME!*
So your kid is deaf, now what?
(please take the following information to heart,
but with a grain of salt... that's what you wanted, isn't it?)
1. Enjoy your baby. He will only be little once. And he WILL be okay. Really. I promise. Not joking. Take my word for it. The next few months/years will be difficult, but he will be just fine, really.
2. It could be worse. Hearing loss is lifestyle threatening, but not life threatening. However, only you are allowed to admit this. If anyone else tries to tell you this in a poor attempt at making you feel better, you have the right to smack them.
3. You are allowed to grieve. Take your time too. You did nothing wrong, really. You did not sign up for this. Find the poem "Welcome to Holland" and read it repeatedly with a box of tissues. It will make you feel better. Are you done? Great. Now start advocating for your child.
4. Severe-profound hearing loss is a fancy way of saying that your child is deaf... really deaf. deaf. deaf. deaf. Get used to it.
5. See a competent pediatric audiologist and get your son fitted with hearing aids ASAP. They may not work so well. You may never see him react. The feedback will drive you crazy. But, it's definitely worth a try.
6. Contact early intervention right away. They will come to your house for an initial evaluation with 10 people in tow, so don't be alarmed. Your son will qualify for services automatically because of his hearing loss, and it will be a great experience. Make sure you request speech therapy in addition to special instruction. They will try to avoid speech therapy, but your son deserves it.
7. Apply for medical assistance if you find out your private insurance won't pay for anything. And it probably won't. This may just be the most humbling experience of your life. Be extremely thankful for it.
8. Choose a communication method, but remember to stay flexible. What's right for your son when he's 3 months, 6 months, 12 months, 2 years, etc. may be entirely different. It could also be the same. Constantly re-evaluate and do what's best for him.
9. Navigate the wealth of knowledge online! You're not alone. There are lots of parents out there willing to help! Check out Deaf Village and join the yahoo group Listen-up, created for parents by parents. You don't ever have to comment, but you can silently read, read, and read more. You may learn more here than from the professionals. Other parents will be one of your best resources for knowledge. They've been there.
10. Journal your feelings. Or even better, start a blog. Share your joys, your sorrows, your son's successes, and his struggles. It will be a great online baby book.
11. Get involved with a support group. If you can't find one, start one. You will never regret finding a local friend going through the same exact thing you are.
12. Learn about the cochlear implant. It will not fix your son's hearing, he will always be deaf. Don't jump into this decision. But, if you want him to listen and hear, and he can't do so with his hearing aids, explore this option. You won't regret it. Go to the cicircle website for great information. Join their yahoo group too. Or, just read their blog.
13. Your son needs language. Learn some baby signs. Signing Time videos are amazing. Start out with the "First Signs" video. "Where's the Frog" is too advanced for you. You don't need to learn question words yet. You will be singing and signing in your sleep.
14. You will have umpteen appointments in the next year. Learn to pack well, travel light, and pump on the go. Sometimes, you might travel 80 miles to meet with a doctor for 10 minutes, and then drive home. Come with a list of questions each and every time. He will probably laugh at your list, but ask them anyway. Be an informed parent, and be proud of it.
15. Enjoy your son, he'll only be little once. Talk to him constantly and sing to him, even if you know he can't hear you. It's as much for you as it is for him. Oh yeah, and make sure you meet that 500-a-day kiss quota. He needs to know how much you love him. Oh yeah, and enjoy being able to make lots of noise while he sleeps. It may be very different with your next child.