7 Things I Did First When I Found Out Charly Was Deaf
1. I told my family and friends.
The very first thing I did was call my family and friends. You would think this would be a no brainer, but I have talked to a lot of parents in denial when they receive the diagnosis (which by the way is totally normal) and to openly share the diagnosis even when you’re having a hard time processing is really important. The reason it’s important is because you cant do this alone. It is a lot to process and someone in your family may have insight that you didn’t know about. Most importantly, when you hear them tell you that they love you and they love your baby and they are going to support any decision you make, you immediately feel a weight lifted. When they ask what they can do to help it makes you feel better about handling the journey and you can take a deep breath during a difficult time and feel your load lighten. When people offer to help with your other little ones so you can make your appointments, take the help! The support and assistance was the biggest thing that got me over the hump in the beginning when I found out Charly was deaf.
2. I got on social media.
The second thing I did after i told family & friends was go on youtube, social media, and the internet. I know some people hate that advice but it honestly helped me so much because I had never met a deaf person in my life, I had never heard of cochlear implants, and I didn’t know about deaf culture. When I got on the internet and typed in “what do I do when I find out my child is deaf”, I found a lot of great resources for coping, next steps, options, and therapies.
When I went on youtube and looked up “deaf child”, I got to see amazing, beautiful children thriving and learning the language of their families’ choice which was huge for me. I did not know what the possibilities were before seeing it come to life in video form.
When I went on Instagram and searched hashtags such as #deafkidsrock, #cochlearimplants, #deafbaby, etc, I got to meet and connect with other moms like myself who had been in my shoes. I sent messages right away to families to see what they did next, how they coped with the diagnosis, and how their kids are doing now. Any information I was curious about, I was able to find by connecting with other families on social media. I know, I know—a lot of people frown upon “Dr. Google”, but honestly, we live in a lucky time where we can go on the internet and get a lot of great resources and information.
3. I signed up for mydeafchild.org.
And speaking of finding resources on the internet, I found mydeafchild.og through an internet search. My Deaf Child is run by Rachel Coleman who is just a huge source of knowledge and inspiration for other hearing parents of deaf children. Her daughter is deaf and she started a kids ASL video series called Signing Time (which I actually touch on later). There is a lot of great information about processing the diagnosis, language, and next steps, AND if you are the parent of a child 36 months or younger, you can submit diagnosis paperwork to enroll in an absolutely FREE ASL course. Rachel Coleman, if you ever happen to see this, I would love for you to know that I am so inspired by you and so appreciative for everything that you have done for this community.
4. I signed Charly up for early intervention.
I cant speak for Early Intervention (EI) in other states or countries, but in Virginia we have a really great EI program. I honestly think someone might have called me the week we got diagnosis before I ever had to reach out to them. Within the week, we had a coordinator at our house, her assessment and IEP done, and we were able to discuss our concerns and desires for her care and language. She receives free speech therapy in our house once a week with a wonderful speech therapist which is a game changer. I was dealing with a brand new baby and diagnosis, trying to juggle work and multiple kids, so having care IN HOME made it a comfortable place for us to learn about hearing loss and for her to develop to where she is at now.
5. I joined a support/community group for other families with deaf children.
The best thing we have done is immerse ourselves in the deaf community and surround ourselves with other hearing parents of deaf children. In Hampton Roads we have a group called Families2Families which meets once a month. It is comprised of deaf adults and children of all language modalities. This is where we were able to meet a deaf adult for the first time, see ASL in person for the first time, and see a cochlear implant for the first time. Joining a community support group is such a great way to expose yourself to the deaf community and connect with other families who have been there and get it.
6. I started learning ASL.
American Sign Language is so beautiful and I have absolutely loved starting to learn the language (although I am quite a slow language learner and am trying not to get discouraged). There are so many options for language when you find out your child is deaf— ASL, spoken language, lip reading, cued speech, etc— we decided to do total communication which is also and verbal speech with an emphasis on spoken language. Language a very personal decision for families and you will hear me say this often but as long as you are giving your child love and language, then you are doing a GREAT job!
Resources for learning ASL:
mydeafchild.org has a great free resource that I mentioned earlier but my FAVORITE site to learn asl is lifeprint.com. Bill Vicars— the man!—is the professor who teaches it and it’s completely free. The way that he teaches is really comfortable for me in the way I learn and process language. I highly recommend you check it out! And as mentioned earlier, Signing Time is a wonderful kids video learning series that actually is how I picked up most of my basic signs in the beginning. I actually found all of the videos at my local library but you can also purchase the series on iTunes!
7. I met with an audiologist and ENT.
It is one thing to have a good support system and good ole Dr. Google, but an important step, especially if you are going the CI or amplification route, is to establish a care team and meet with your audiologist and ENT. Being able to meet with a human professional and hear their insights is so helpful. We were able to understand her hearing assessment needs, the cochlear implant surgery process, the timelines, next steps, and important appointments. This made our journey much more realistic and visual for me. I was able to see the light at the end of the tunnel and I was finally able to cope and get excited about it.
So that is it!— the 7 steps I took first when I found out Charly was deaf. It is nothing ground breaking but I hope it may help you navigate this journey ahead with a little more confidence and guidance.