Archive for May, 2009

Great news- yesterday we went to see Jay’s audiologist to have a routine hearing exam, and she told us about these new hearing aids that don’t just amplify everything but can translate high frequency sounds (the ones Jay has trouble with) into the low frequency register.

Confused?  Okay, I’ll try to explain to the best of my limited ability.  (Before Jay’s diagnosis, I had no idea about frequency- I thought it was all about sounds not being loud enough.)  Jay hears fairly well in the lower frequencies- that’s why it’s easier for him to understand men than women.  Most vowel sounds occur in the lower frequencies, which is why his speech is somewhat dominated by them, and ending consonants are often left off.  Sounds like ff, ss, sh, ch (sounds with a lot of air)- these are all in the higher frequencies.  Although his hearing impairment in the lower frequencies is considered mild to moderate, his hearing in the higher frequencies is severe to profound. So although he hears quite a bit, he misunderstands a lot and sometimes really struggles to catch everything. 

So, long story short- these new hearing aids will help him hear more speech sounds.  Yayyy! 

I love Jay’s audiologist.  She has been so patient and understanding with us, particularly with me- there have been many times when I have called her with endless questions and worries.  And although I’m sure she’s a super busy woman, she never rushed me and answered all my concerns honestly.  And believe me, not all professionals are so helpful- I could tell you some horror stories about some of our experiences, but that can wait for another time (when I’ve got a box bottle of wine by my side to calm me down).

This makes me feel somewhat better because lately I’ve been really thinking that maybe Jay should have a cochlear implant.  His Dad and I disagree on this- Jason thinks that it’s too invasive and unnatural (what parent wants to have a doctor drill into his child’s head and stick a probe into his brain?).  When Jay was first diagnosed, I was really offended that some doctors were so quick to insist on a cochlear implant.  We basically went from being told that our son’s hearing was fine to doctors telling us that basically our son was profoundly deaf and needed an implant.  Period.  No discussion about what had caused it, no explanation for his inconsistencies on tests, his remarkable speech considering his level of hearing.  Case closed.  Next.

We were not so ready to rush into such a permanent procedure without doing some further investigation.  We went to several more doctors and received several different results when they examined Jay.  No one seemed to know what was going on with his hearing, and his Dad and I weren’t ready to jump into surgery with so much unknown.

So we decided to give hearing aids a chance.  The first year was a little discouraging, but now we couldn’t be happier with the results.  Jay’s doing so well that I feel ungrateful or greedy for even wanting more.  But I can’t help but notice that children with cochlear implants seem to struggle less communicating, especially with their peers.  Jay has a hard time keeping up with the conversations of kids his own age- they tend to talk fast and aren’t patient enough to repeat things.  The possibility of making it easier for Jay to socialize dangles in front of me like an elusive carrot.

Ironically, the new otologist (a highly respected doctor and very experienced- I think he was the head of the department at Walter Reid or something) tested Jay and told us that Jay’s hearing was too good for a cochlear implant.  Basically, he said that Jay’s “bad” natural hearing is better than the artificial “good” hearing provided by an implant.  (Of course I had to hear a chorus of “I told you so’s” from my husband all the way home.)  Which just goes to show how quick Jay’s other doctors were to slap a one-size-fits-all solution on him in the beginning.

It’s kind of bittersweet- if Jay had been born profoundly deaf, there would have been no question about it- he would have had a cochlear and would hear speech and talk better than he does now.  I could probably really press the issue because he is borderline, but I’m not ready to do that.  Jason is adamantly against it, and Jay is too, somewhat.  Although the kid is pretty much against anything that might involve any amount of pain or needles- when he used to get vaccinations it would take every employee in the doctor’s office to hold him down.  I told you, the kid’s strong.

So for now an implant’s not in our immediate future, although it is always in the back of my mind.  And who knows, with any luck researchers will develop a way to regenerate Jay’s hearing using his own cells.  Like my husband says, “If they can grow an ear on the back of a mouse, why can’t they grow hair on top of my head?”

Side note:  I was pretty offended by the episode of House the other week in which the doctors took it upon themselves to implant a deaf 14-year-old against the wishes of his mother and himself.  Yes, I struggle with the decision of some parents (like on the documentary Sound and Fury)  not to implant their deaf child because they want to preserve deaf culture.  I feel sorry for these children because unlike their deaf parents, who are surrounded by their peers in the deaf community, a whole new generation of deaf children is being implanted and integrated into the hearing world.  These deaf children will grow to be part of an ever smaller minority and will be more isolated than previous generations.  I think that although the intentions of the parents are heartfelt, they are acting out of fear and are creating a harder life for their children.

However, having said all of that, it is still the decision of the parents and child.  This is different than whether or not to give a life-saving blood transfusion.  This is a quality of life/ cultural decision.  Who are we to choose for others?  I would have been livid if one of Jay’s doctors had implanted him against our wishes.  Many of them barely gave his situation more than two minutes of thought as they read his chart before entering the exam room.  One particularly bad ENT wanted to implant his left ear, which, as it turns out, is his better side.  Those kind of doctors just see patients as cases, not as people who will have to live with the impact of their snap decisions for the rest of their lives.


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Last week was field day at Jay’s school and I volunteered to help out with the second and third graders.  I have to admit, I was a little nervous for the guy.  Poor thing, he’s got my athletic grace and agility.  Which is to say he has none. 

I know I haven’t encouraged sports as much as I should have.  We tried karate when he was in preschool (because that’s always a good idea- encouraging four-year-olds to go around kicking each other).  We thought that it would be a good activity to be involved in, you know how they’re always talking about the discipline and all. To be honest, I secretly wanted Jay to learn karate so he could drop kick any punk who teased him or gave him a hard time about having a hearing impairment.  Is that wrong to wish bodily harm on another child? 

Turns out my conscious was safe.  Jay did not take to the lessons.  In hindsight I realize that hearing the instructor in that huge gymnasium was close to impossible for him, and that led to boredom, which always leads to inattention and misbehaviour.  I remember one day in particular when the instructor actually pulled Jay out of class in front of all the other parents and children and said, “I can’t have him in here disrupting the class and distracting the other students.”  I was humiliated and frustrated.  Why couldn’t Jay just do the little exercies like the rest of the children?  I felt like the worst mom ever.  All the other parents were staring at us as I put on Jay’s shoes as he cried and made a scene, which made things even worse.  There was judgement and contempt in some of their faces, and pity on the others.  I don’t know which one was worse.

After that I was reluctant to put Jay in other sports.  I was worried that he would have a hard time understanding the rules, the coach’s directions, and I pictured the rest of the team getting mad at him for fumbling or blowing a game because he was clueless.  I also dreaded having public confrontations with him if he shut down or got sullen and defiant.  The years between 3 and 5 were really hard for us;  we were both frustrated because communication was not easy.  There were a lot of tantrums on his part and looking back I realize how hard it must have been for him as he matured but was unable to easily express what he was thinking.  I can see that now, but at the time it was very hard.  Everything seemed such a battle, and I hated the meltdowns in public.  I know that I shouldn’t have cared so much what other people thought, but I couldn’t help it.  Every time it happened I felt a little more defeated, a little more of a failure as a mother.  I knew that spectators thought that Jay was just a spoiled bratt and I was just an indulgent, bad parent.  Friends thought that I would be sad when I first saw Jay wear his hearing aids, but if you want to know the truth it was a little bit of a relief.  At least when people saw them they seemed to give us a little more latitude, and I relaxed somewhat because the pressure of their judgements was lessened.  Ridiculous, I know, but that’s how I felt.  So many times I’d wanted to say to gawkers “Give me a break, would ya?  You have no idea what we’ve been going through lately.”  Now I didn’t have to. 

So there I was, putting off Little League and soccer, thinking next year- then he’ll understand better and it won’t be so hard for him to catch on.  I admit, I think I held him back because of my own anxieties.  I hated team sports as a kid because I was never good at them and always wanted to disappear any time the ball came anywhere near me.  Now Jay is eight and communicates well, but he’s past the age for beginner stuff.  The window for t-ball has passed, and I can’t picture him jumping right into pitched baseball.  I’m thinking a lot of strikes- a lot.  And most of the kids his age have been playing basketball and soccer for years now.  In waiting for his language skills to catch up, I’m worried I’ve done him a disservice by not introducing him to teams while they were all beginners and all generally bad.  (Did I mention I worry?  A lot?  You’ll begin to notice the theme quite early as you read my writing.)

So there I was, participating at field day and ready to give moral support and encouragement.  I was assigned to a station and couldn’t follow Jay’s group around, but as it turns out his class came to our post first, which happened to be tug of war.  I was excited- my kid might not have mad skills with a ball, but one thing he’s got is strength and size- Jay’s a big boy.  We had to quit kidding ourselves about him just being big-boned and had to start buying clothes in husky sizes.  (Another consequence of him not participating in sports, I’m sure).  He’s not fat, but he is definitely on the chubby side.  I secretly think of him as my little Bobby Hill from King of the Hill. 

Jay”s team won right off the bat with him in the important anchor position and I couldn’t have been prouder.  I saw the wild joy and triumph in his face and thought Okay, it’s definitely time to get him into some games.  His team lost the next two matches, and a lot of other competitions throughout the morning, but he was still happy and having a good time.  The teacher even praised him when I came to check on him during a break and asked if he played soccer because he did great at that activity.  I was so proud and a little chagrined.  As usual, I wasn’t giving the kid enough credit.  He doesn’t need me to protect him- he’s pretty good at handling himself now.  Looks like it’s Saturday games and pizza parties for us in the future.  But God help any parent who says anything negative if Jay makes a mistake on the field.  I don’t care how big or old you are, you’re going down if you mess with my kid.  I have a feeling that will probably never change.

This is pretty much how I still ice skate, too. 

Jay ice skating.  This is pretty much how I still skate, too.

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