Wisdom from the Web

Compiled by Barbara Luetke,
Washington H&V

Recently I had an opportunity to ask parents through one of the many Facebook groups on the web if they would share what they have learned about raising a child with hearing loss and what they would want others parents to know. Parents on this particular site arevery supportive of one another and appreciative of all communication modalities. We get some good conversations going! While these parents all have kids using implants, I thought their comments spoke well to other families raising kids regardless of technology choices.

Enjoy them!

Judy from VA shared that her 21 year old son was implanted at four years of age and is a junior now at Virginia Tech. “My advice is to remember that your child is first a child. Expect no more or less from him. He’s gonna be fine. My son is doing well and never ceases to amaze and impress us.” Jessie (NY) added: “Most of all, RELAX and enjoy that special little guy/girl. Nothing hampers their shining personalities!”

 Be Positive

Cindy said:  “It’s a journey, a marathon, not a race. Sometimes the education and/or medical system fails our kids; but our children are not failures. Unbiased support and connection with Hands & Voices is so important.” Judy from Iowa, whose son, Hahn, is 7, related: “Enjoy the ride! Let them lead. Oh, the places they’ll go!” Pia (IL) said she often thinks of the quote “We cannot change the direction of the wind, but we can adjust the sails.” Colleen (MA), mother of a four year old, said, “Every challenge makes her stronger. Celebrate every achievement and treat her no differently then anyone else. Educate yourself and advocate for her, teach her to advocate for herself. Love them for who they are and show it every day.” Casey (TX) said to “give your child every opportunity in life.” Tracy (MI): Mother of an eleven-year-old daughter who was implanted at 4 years of age. “Your child is more than her hearing loss. Don't get so focused on the "disability" that you lose sight of all the other abilities and gifts she brings to this world.”

Tammy, mom to a two year old daughter who is soon to be implanted in the second ear, said that she was so thankful everyday that her children are healthy. “I look at them as having an advantage: learning to listen! No disabilities in this house, lol! I take pride in my children’s implants and hearing aids. Show those babies off with colorful designs! Make it fun!”

Be Educated And Advocate

A majority of parents promoted parents’ efforts to educate themselves and advocate for a child. Cheree (TX) has a 25 year old son who was implanted at age two. “He is a successful professional and working on his master’s degree. Believe in your child…advocate for him and teach him to advocate for himself. Never place limits on what he can accomplish!” Elaine from New Jersey has a ten-year-old daughter who had sequential implants at ten months and three years of age. She says, “Stand up and fight for your kids! Knowledge is power.” Angela (NJ), mom of a 7 year old who was implanted one year ago, reflects, “I would say don’t back down when you are being denied something; while at the same time trying to work as a team. That is a delicate balance but very necessary.”  Autumn (FL) is a mom to a three year old who uses both a CI and a hearing aid agrees. “Always be their voice and advocate!” Casey from Texas offered this advice as well: “Follow your gut, and do everything you can for your child. Always be there for your kiddo! And love unconditionally! They aren't different-- they are unique individuals sent to educate us and others…” Michelle, a mom to a 12 year old daughter, says, “My advice would be to always have faith in your child and your decision for them, be hopeful because and know that in the end, they WILL be great; continue to encourage them in whatever they want to do. Don’t let them think that there is something they can’t do because of their hearing loss.”

In a similar manner, Jennifer (MO) advises not to let others persuade you that ‘okay’ is good enough for your child.  “Help them reach their full potential. Talk, talk, talk to your child as much as you can; every word counts. Make sure you find other parents who have gone through similar experiences…you are not alone in how you feel.” Nuria (Puerto Rico), mother of a 14 year old boy who had bilateral implants at two and five years of age, said: “Never give up and you will be amazed…The words come, and then the sentences come, and then the conversations come. Those conversations are music to my ears! Advocate with passion and remember, let your children enjoy life!” Jessie (NY) is the mother of a four-year-old who was implanted sequentially last year. “Educate yourself on your child’s hearing loss, there's sooo much to learn and YOU WILL have to advocate for them especially through school to make sure they are getting the services they need.”  Michelle from CA is a mom to a four year old who had a progressive loss. She responds, “Face your fears and educate yourself about Deafness. Learn the best way to communicate with your child so they never feel isolated. Read to them often and communicate always and expose them to new language. Always trust your motherly instinct and get a second opinion if you feel it's necessary. You are your child's advocate; fight for them.”

Follow Your Instincts

Speaking of instincts, Jennifer in CA, a mom to three kids with hearing loss, said to listen to the advice given you by professionals but first and foremost, follow your instincts. “You know your children the best. There have been a few times I have gone against the advice given me and I have never regretted it. Parent instinct trumps all.” Karen (OH), mother of a boy who is 5, advises, “Trust your gut, take all outside advice with a grain of salt, and don’t stay married to one method of communication.”

Have Patience

Kirsten (Ontario, Canada) who is a mom to a two-year-old shares: “No one knows your child better than you do. Be patient; it’s a long journey, but a very happy and fulfilling one.” Gina from Kentucky, agrees. “Patience, patience, and more patience. Remember that every child learns differently and don’t get discouraged. With us, it has been a roller coaster ride.” Kendra (OH): Our son is 22 months old. Every frustration, tear, battle and emotional high/low is going to be worth it in the long run. I think of this quote: "But as for you, be strong and do not give up, for your work will be rewarded." Gabriella (Ohio) mother of a five year old who was implanted at 13 months. “Even though speech therapy several times a week seems like a lot, there is an end to it. When your child can speak more clearly than a hearing child, you will find it as time well spent. A happy child is a happy child!”

Finally, one of the moms shared that it is important to track progress. Kathleen from WI shared that her advice would be to film your child from the beginning. “Watch the tapes often. They show the progress and will melt your heart as the years fly by.” I would add to this that our family had a related New Year’s tradition. We videotaped our two daughters (implanted at four and five years of age and now young adults) on New Year’s, answering the same 20 questions. We always used the same video so that all the clips were sequenced. It was rewarding for all of us to see the changes and progress in both what they shared, their growing personalities and confidence, and speech and language, too!

Editor’s note: Barb Luetke received permission from parents on the Facebook page Parents of Children with Cochlear Implants with H&V. Luetke is the administrator at Northwest School for the Deaf in the Seattle area along with her role on the board with WA Hands & Voices.