It’s hard hearing

A lot has changed since I have written last. I didn’t read my last entry, but suffices to say, a lot has happened.

We now have three sons. And our youngest is hard of hearing. So much time and effort and understanding has gone into this diagnosis. And many more questions, and options, and choices await us with this diagnosis. Our youngest, turned 2 in August, and received hearing aids in September. And now it is October. That is how new this all is. We knew something was up with his hearing in April. Well, we were tipped off thanks to Early Intervention and a hearing test. But it took months of testing, ear tubes being placed, a sedated hearing test, to finally get a his hearing test settled so we could get hearing aids.

And now he is 2. And I am thinking of preschool programs, while trying to coordinate playgroups at the deaf school, Early Intervention services, and our other son’s needs. There are unknowns everywhere. To hearing world I have to explain he is hard of hearing, to the deaf world I feel I have to say he does have some hearing. Which I guess I should explain. He has sensorineural hearing loss. He starts out at midly deaf, but as the sounds go higher he has a less chance of hearing it, so that the very highest sounds, like /s/, /f/, he is severely deaf in. (Mild, moderate, severe and profound are the catagories of classifying hearing loss).

Not an easy diagnosis.

I don’t mind questions about it. I like to talk about it. But there aren’t easy questions, like what % of hearing loss does he have? That isn’t easy to answer. Because he has such a range. And because what the audiogram (the graph the audiologists use to show plot hearing) says he hears may not be indicative of what he can understand or perceive as sound, if that makes sense. He is talking. Something that in our first appointment with an audiologist said may not be possible for him.

We are a hearing family. My husband and I hear, our older children hear, it is just Maciej. Just Maciej experiencing this. I feel so helpless as a mother. He is experiencing the world in a way I never have. In a way I can’t experience. I always thought of being a parent as an ambassador of the world for my children. And here I am, able to experience the world in a way my child can’t. I know I have to be his advocate. I know I have to be his voice and fight for him. And I will, gladly! But can someone tell me the right way? The right choice? The best fit for him? Mainstream. Deaf school. Interpreter. ASL. Speech Therapy. I DON’T KNOW! This is new to me. And new to him. How does he know, or I know, if he will prefer sign to speech since we only have sign class for so many hours a week? How do I know if he really does want to sign instead of speak, because we all just speak to him and speaks back. We are hearing and even though we try to sign, it is our native language to speak to him. To treat him like one of us. He is a part of us. And yet, I need to help him. I need to help him learn a language, ANY LANGUAGE, to feel in, to express himself in, and you know what, that may not be my language. How do I do this? Simultaneously teach him, and learn a language?

Did I mention we are a bilingual household? My husband speaks Polish. My older two speak Polish to him and English to me. They watch shows in Polish. Are read to books in Polish. Go to Poland and speak to everyone there in Polish. And what about Maciej??? How will he do all these things? Will he be able to? Feeling Polish, feeling a part of the culture is wrapped up in language…how does he feel?

I don’t know if I can fully explain how this changed us. From asking Maciej where his nose is and having him point at his nose, to asking him where the ball is, where the the dog is, where the giraffe is and having him always point at his nose. “Where is” became just point to your nose, and the look of confusion on both our faces as he got it wrong. The ball is not on your nose. Neither is the giraffe. Or imagine the despair I felt when I called to Maciej and I was just standing behind. And he stood up and ran to the kitchen to look for me. I always in the kitchen. He heard his name. I must be there. Imagine his confusion as he turned from the empty kitchen to realize I magically ended up in the same room he just left. My son couldn’t find me. And I was right there.

So this hard of hearing. This is what hard of hearing looks like. It is better with hearing aids. Hearing aids are amazing. They have turned everything around. These little blue ear pieces of magic have transformed our lives. He is talking. He is learning both English and Polish and is also Signing. But what of our future? Where is he going? Where will he be most comfortable? In a Signing world? In a hearing world?

I go back and forth. Maybe he needs a foundation in ASL and it is more important for him to Sign than speak. But, am I selfish if I want him to talk? To want him to feel most comfortable in the hearing world with me, his brothers, his family? And just because he is hearing as well as he is now, does not mean it will stay. What if his hearing deteriorates? What if he loses it all in a few years? ASL will be his language. We are learning. We are doing all we can…but gosh, it is so easy to just talk to him.

There is a culture around being deaf. Which is amazing, and beautiful, and I am so so so happy to be learning about, and have my son welcomed into! It truly is a beautiful culture, and if you have the time learn about it. Their history is so interesting! So many heroes that paved the way so my son can have an easier time. But am I wrong to want him to be part of my culture, the hearing world? Am I forcing a round peg in a square hole? Do I just need to let it go…

Let go. Maybe. Maybe that is what I need to do. But I can’t. I still have my dreams. I still have hopes for my son. And I know, he will surpass them, and do amazing things. And I will support him and be blown away by him. But while he is young, and under my watch, before he has those big dreams that I can support, for right now, I have to make decisions for him. I have to dream his dreams. And I have to look at him without places limits on him. And so do I give him preschool/early education at the Deaf school? Something different than the rest of my boys? Something so outside my comfort zone? Something, I am still not convinced is the right place for him. Or do I go with mainstream? Something that I know and understand. Something that easy. Something that I am still not convinced is the right place for him. I don’t know. I honestly don’t know.

Maciej likes music. At the center for deaf they have chanting, rhythm, but not music like songs. At clean up they flash the lights on off and make the sign to signal it is time to put toys away. But I can tell Maciej, in two different languages no less, that it is time to clean up and he understands.  At the preschool here in town they would play the song “Happy” while they cleaned up. Maciej could do all that. He walks around singing the tune of Wheels on the Bus and Jingle Bells. But the words are so very garbled. Only by the tune do you know the song. The words are very very hard to understand.

We are the grey. The middle ground. How do I advocate for my child when I don’t know. I don’t know how to do this. I don’t know the right way. I don’t have all the answers. I don’t want to limit him. I don’t want to keep him from something because it is outside my comfort zone or because it is easy. I wish he could tell me. I wish I could peep into the future and see what is best. I wish I could make this better. I wish…I wish… I wish to make him happy. I want nothing but the best for him. And I am trying. I want him to know that. To know that whatever decision I will make, I did out of love for him.

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