Tuesday, June 23, 2009

my brochure

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.


Kel said...

That totally would have been my brochure too. I had to laugh at pump on the go - I wish I had a buck for every time I parked at the far end of a parking lot facing out so I could pump in my car. Glad I did it, but glad it's over too, LOL.

The Stovers said...

I absolutely love this. This would have been great to walk away with the day Shiloh was diagnosed.

leah said...

What a GREAT post! I had a chuckle at the 80 mile drive for a 10 minute appointment. We have a lot of those, lol!


Loved number 4 - I've actually wanted to say that to someone before, but didn't have the nerve! The last one was good, too. I always sing to my children at bedtime. Before William's CIs I sang with my lips to his forehead so that he could at least feel my lips move and feel my breath, even if he couldn't hear me. I remember right after his activation, I was singing to him at bedtime. I put my lips to his head like normal, but when I started to sing he sat straight up and looked at me and watched my lips for a moment. Then he laid back in my arms and let me put my lips back to his forehead again. It was like he made a connection and knew exactly what was going on. It was a great experience!

Melanie said...

LOVE THIS! Can I link to this on my blog?

Bright Family said...

Where is the print button? Does it come in pdf format?

Great post!

Danielle said...

As a deaf person. I just wanted to say this is amazing what you doing for you son. You are like a blessing. Beautiful blog. Im going to add you to my blog roll. Check out my hearing loss blog.



tammy said...

Jen - this is AWESOME!!!! I've always thought the same thing - where was all this information when I found out Aiden was deaf?! I had to find a lot of it on my own. Great post and I love the cover of the brochure too! Just wonderful all around!

Julia said...

FANTASTIC!!! Exactly what I would have wanted to read on the day Ben was diagnosed. I'm going to link to this from my blog.

Lone Star Couple said...

So true!!Great post!

Lone Star Couple said...

So true, I loved this post!

susannah said...

this is great!!!!!! i am going to forward it to m's audiologist. i was actually thinking of doing a similar post bc i had a convo with my audi about things i wish i'd known at teh beginning. this is great.

nicole said...

I stumbled across your blog via "good but hard". You should definitely write a brochure for parents about deafness! I hated everyone tiptoeing around me. Let's just call a spade a spade. I laugh now when they told us that our daughter failed her newborn screening test and the screener was afraid to tell us...when she finally did I said 'I'll take deafness...she is healthy and we get to go home today (the day after she was born) and the screener responded by saying, "She probably isn't deaf, she likely has fluid in her ears." We are nearly 6 years into the deaf world journey and the journey has taken us places and has allowed us to meet people that would have never happened otherwise. Every milestone is a miracle.

Christian and Lily's Mommy said...

Reminds me of when I wrote my Dos and Don'ts almost 2 years ago...you get to a point when you look back and feel comfortable with the knowledge you gained over your journey....great post!