Monday, May 1, 2017

what I'm learning from my hearing impaired child.


As I was getting dinner ready the other night I could hear Johnny and Trixie playing in the next room. All of a sudden Johnny raised his voice and shouted, "No Trixie! My train. Time out. One.....two.....three...."

Most parents get pretty used to hearing their children imitate their style of discipline. Some so much so that it may become an annoyance. But to hear Johnny sentence his little sister to a time out actually brought tears of joy to my eyes. 

Because he was talking, all on his own. 

These days our house is filled with the sound of Johnny's voice. But it hasn't always been like this. 

Johnny was born with a hearing loss. He was just four days old when we received this diagnosis. It came on the heels of a whole slew of other diagnoses, a NICU stay, and major surgery for Johnny. So when the audiologist told us that he had a mild to moderate, bilateral (both ears) hearing loss, it seemed like small potatoes.



Johnny was fitted with hearing aids when he was 8 weeks old and we thought we had dealt with his hearing loss. But by the time he was 20 months old his speech was severely delayed and it was clear that his hearing loss was something we would be dealing with for a long time.

We started taking him to weekly speech therapy at our local children's hospital. The therapy sessions were helping, but not as much as we would have liked. Then when he suffered major setbacks with retained fluid in his inner ear, had PE tubes put in, and had his hearing loss re-diagnosed as moderate to severe, we knew we needed to take more proactive measures. We enrolled Johnny in an oral school for deaf and hard of hearing children. The transition was hard, for all of us. (Picture me looking at photos of Johnny on my cell phone and crying while he was at school) But it was definitely the right decision. He has been receiving very intensive speech therapy 4 days a week for almost a year, and for the first time ever we are really hearing him use his voice all on his own initiative. 

I've been the parent of a hearing impaired child for almost 4 years, and the learning curve has been steep. Of course Johnny is worth any struggle, but this experience has been made even more valuable by the lessons I've learned along the way. I know they are making me a better mother, and I think they apply to parenting across the board and are worth sharing here. 

I am my child's number one advocate. We are fortunate in that we live in an area where there are multiple organizations for deaf and hard of hearing people, and parents of deaf and hard of hearing children. We have an amazing children's hospital system with a wonderful team of ENTs and Audiologists. And our public school system has a very aggressive and supportive early intervention program.

But even with all these resources and experts available, my husband and I are still our son's biggest advocates. We are the ones who are with him everyday. We can see what's working for him and what's not. And since he can't speak (much) for himself yet, we speak for him and help make his needs known.

In Minnesota we have something called Minnesota Nice. It's where you smile and be polite and try to avoid making anyone feel uncomfortable. I'm learning that I need to step outside of my Minnesota Nice comfort zone from time to time to get the results my child needs, whether it's being more assertive with the scheduler at the doctor's office to get him seen sooner, or switching speech therapists even though it might be awkward.


Education Matters. If I had a dollar for every time I was at the park with Johnny and some other kid pointed at his ears and said "what are those?" I could buy myself a pair of Frye boots.

I used to get annoyed by people asking about Johnny's hearings aids, and by answering the same questions over and over again. I didn't want anyone to single him out by drawing attention to his hearing aids. I wanted to people to treat him like every other kid.

But I am learning now that people won't be able treat him like every other kid until they understand his hearing loss, and so I am happy to educate them.

Those are hearing aids. He wears them to help him hear better, just like I wear glasses to help me see better. He was born with a hearing loss. It probably won't ever get better, it might even get worse. But he hears pretty normally with his hearing aids on. No, they don't hurt him. Yes, he takes them off when he sleeps. Yes, he can still do all the things you can do.

But the education doesn't stop with telling people why he wears hearing aids. I also need to educate people on how they can help Johnny reach his maximum hearing potential.

Crowded rooms, noisy car rides, being outside on a windy day, these are all settings that can make it difficult for Johnny to hear. But there are things you can do to help make up for that difficulty. Make sure he can see your face when you're talking to him. Tap him on the shoulder before you start speaking so he knows who's speaking to him. We have chosen not to use sign language in our house. With the craziness of Alex's school schedule, and having a baby in the house it was not a good fit for our family. But there are a few signs that we know and use, and we do plenty of gesturing when speaking to Johnny. Something as simple as pointing to the thing or person we're talking about can help him out a lot.

Understanding comes before expressing. Because Johnny's speech is pretty limited it's easy to fall into the habit of only using words that I know he knows. But if I only did this then Johnny would never learn any new words. I have to remind myself that he is capable of learning language, and that he has to hear a word anywhere from 1 to 100 times before he will start to use it.

Parents are their children's primary educators, even if the child goes to school outside of the home. That means it's up to me to keep challenging Johnny, introducing him to new things, and giving him the opportunity to improve. I do want to make sure that he can understand what's being said to him, but it's not my job to make things easy for him. It's my job to help him grow.

Intellect is shown in many different ways. I think this is something every parent knows to be true, until their child shows a lack somewhere. Then all the doubt floods in and the comparing starts.

Because Johnny's speech was so delayed for so long, it also delayed a lot of other learning milestones. He wasn't naming animals or imitating their sounds. He didn't know colors, or how to count. He couldn't identify any extended family by their names. I never would have said out loud that I thought he wasn't intelligent, but I think deep down inside I was afraid he wouldn't be successful in life.

Around the time Johnny's speech was at it's very worst we started seeing a new speech therapist who knew how to draw Johnny out. In that first 50 minute appointment with her Johnny said more words than he had said in all his previous appointments combined. "He's doing really well!" she kept saying to me. I just stared in stunned silence.

At the end of the appointment she told me not to measure his intellect based on how much he's able to say. Verbal skills are probably the easiest way to measure a child's intelligence, but they're definitely not the only way. When I started to look for his intelligence in other area's I began to see it everywhere; in his ability to do puzzles, and build with blocks, his fine motor skills in holding a pencil or using a scissors. I started letting him help me with chores around the house. I was amazed to see him folding pieces of laundry and putting shoes away where they belong. I let him help me unload the dishwasher and he sorted all the silverware correctly and knew in which drawer or cupboard all the dishes belong.


Evaluate how you define success. Johnny's speech is doing so much better than it was a year ago. He's counting, identifying shapes, colors, animals, letters of the alphabet, and he's able to communicate his thoughts and desires. He still has a lot of work to do to catch up with his hearing peers, but we are hopeful that his hearing loss won't limit him as he grows up.

I do still worry sometimes about the future, and that Johnny won't be "successful" in life. When I find myself thinking those kinds of thoughts I need to ask myself what my definition of success is. Is success getting into a great college, getting a high paying job, and being esteemed by many? If so, then he might not be successful. Come to think of it, Trixie, or any other kids we may have, might not be successful either.

But what are the things I really want for my children? I want them to know and love God, and to know that they are loved by Him. Then I want them to know that they are loved by Alex and me. And I want them to use the skills God has given them, and to have close and meaningful relationships to help carry them through the challenges of life.

If this is my measure of success then Johnny is well on his way.

2 comments:

  1. That last bit, about measuring your child's success, rings true for me, too. It's so easy to find myself automatically thinking in terms of academic accolades for my kids even when in my heart I know that's not the ultimate goal.

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  2. Thanks for sharing this beautiful text!
    I arrived here because I received "Scripture AND Tradition"... and... then... I found your amazing blog!
    I'm an Apostolic Novice (Sisters of the Providence) and... a SLP. Reading your words, which were "written from the heart", helps me to "walk a mille in the shoes" of the wonderful families that God has sent to my life. I learn from them everyday.
    Greetings from Arequipa, PerĂº. God bless you and your family. Thank you!
    Sincerely,
    Natalia (the colombian novice ;) )

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