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You Are Perfect

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What Does Jay Hear?

The short answer to that question would be “every time his Dad passes gas within a 10 mile radius, but never reminders to do his chores.”

I’ve seen countless audiograms and tried to get a grasp on the intricacies of Hertz and Decibels, but to be honest much of it is still Greek to me. I wish someone could slip a magical set of headphones over my ears that would allow me to hear things as Jay does. As a mother, I want to understand my child better, and it would help me navigate that fine line between not letting him use his hearing impairment as an excuse to get out of trouble, and unfairly chastising him for things he honestly didn’t understand.

In the past I’ve struggled to explain Jay’s level of hearing loss to others. I think because he does so well, people don’t realize how significant of an impairment he has. Below is a graph I found that illustrates some of the sounds one would hear at specific decibels and frequencies (for example, a barking dog registers at about 65 decibels and 250Hz). I graphed Jay’s audiogram onto it, to give a layman’s perspective of what he can and can’t hear.

Decibels, or how loud something is, is represented vertically, with softer levels at the top. Frequencies are shown horizontally, with lower frequency sounds the left, and higher ones (like birds chirping) to the right. The top line is the map of Jay’s left ear, his better one. The bottom line is his right. Everything shaded above the top line represents sounds that he does not hear. Notice that the volume of normal conversation occurs between 30-40 decibels, which is out of his range.

Hearing aids amplify things tremendously, bringing Jay up into more of the speech banana (as audiologists call it), but that doesn’t mean that he hears speech clearly. The letters scattered throughout the chart show where certain speech sounds fall in the spectrum– not all letters are created equal. Jay still has a hard time hearing a lot of the softer sounds like -ch, -f, -s and -sh. I imagine that for him, listening to someone talk might sound like someone talking through a bad phone connection. Or watching t.v. with the volume just a little too low, so that words seem muffled. There are a lot of holes to be filled in, not to mention a lot of competing background noise that also gets amplified.

Looking at Jay’s audiogram makes me that much prouder of his achievements. Yesterday I attended his annual IEP (Individual Education Program) meeting at his school. Jay has always been mainstreamed and placed in classes alongside his peers, but also receives support from the teacher for the hearing impaired, Mrs. Maxwell, whom he meets with two and a half hours a week, along with speech therapy one hour a week. All the students with hearing impairments in our county attend Jay’s school, and we feel that it provides the best of both worlds for him, as I believe his IEP meeting proved.

Jay is currently reading above grade level, and performing above grade level expectations on standardized tests. Learning that would make any mother brag, but, as Mrs. Maxwell proudly told me, “Jay is doing things that kids with his level of hearing loss aren’t supposed to be able to do.” Typically, children with a hearing impairment struggle with reading and language arts because of their more limited vocabulary. Jay is doing so well that once again Mrs. Maxwell said that she feared the school board would cut support services for him, so she would really have to stress the importance of continued access to programs. I heartily agreed– I’ll take whatever help we can get to ensure his success!

I feel very fortunate. Jay is surrounded by an awesome staff at his school, and he is a smart, hard-working kid. We’re so lucky– a word I never thought I’d use to describe us five years ago, but an adjective I feel wholeheartedly today.

P.S I have no idea what that branch on the chart is supposed to mean, either. Talking leaves? I thought the wind in my tree was just a bad Patrick Swayze song. Yes, I said it. That song was BAD.

P.P.S.  Jay also receives support two hours a day from a wonderful interpreter named Miss Rita.  Holla!

 

Even Ralph and Sam took a break at the end of the day.

In His Own Words

I thought you might like to meet Jay. I recently finished an essay for Hearing Health magazine’s Spring issue about how far Jay’s speech has come since getting his hearing aids five years ago. Having said that, please excuse the poor quality of my voice– it sounds as if my lips are directly on the microphone and someone is pinching my nose as I talk. And that is not the way I say goodbye. (What in the world?) Megan had just woken up from a nap so she has her pacifier. I know– she is WAY too old for that thing. Jay never had one, even as a baby, but I fear Megan will sleep with one until she is thirty.

Anyway, meet Jay and the D-Rex he bought with his birthday money:

And because I am a believer in equal coverage for both parties:

Hakuna Matata

When trying to break the will of an adversary, the United States government will often use a tactic that involves a constant bombardment of loud, repetitive music. It’s a strategy intended to wear down the psyche of the enemy. The military used this ploy against Noriega in Panama, blasting 80’s rock into the dictator’s compound. I don’t know the name of the person who first came up with this method of torture for the CIA, but I can tell you this with absolute certainty: that person had children.

It began with my daughter Megan’s love for The Lion King. To buy some time to do things like cook dinner, I would coerce Jay into playing Hakuna Matata on YouTube for her. Harmless enough. But somewhere along the line my son became hooked and before I knew it he was playing every version of the song he could find, including the Korean one. The singing itself was not that bad. What drove me over the edge was this:

Remember when I wrote that nice little post about how I was going to stop nudging Jay to act like his peers and encourage his creativity? Yeah…well, THIS? Does not fall under that umbrella. This must stop. IMMEDIATELY. I would personally like to thank the two women in this video for making this over-the-top version of Hakuna Matata and turning our lives into an episode of Glee. My son is now an interpretive dancer.

Some of our friends have found a lot of humor in my mortification. One in particular threatened to blurt out the name of the song the next time we were all out together (that’s all it takes to get Jay started). To which I responded by stabbing him in the eye informing him I would retaliate by mentioning the Wii around his son (the child’s pupils immediately dilate and his jaw goes slack). Harsh? Go ahead and play that video say, oh, 263 consecutive times and then judge me, people. I dare you.

Dear Jay

Aren’t you so glad you eventually grew out of your barber shop phobia and I no longer have to give you haircuts like this?  Love, Mom.

Jay turned nine this weekend. It’s been a busy couple of days that included this sleepover:

People have looked at this picture and questioned my sanity, but honestly, I couldn’t have been happier to have a house full of rowdy boys. Seeing all of them having such a good time made me realize that my son has great friends and is happy. For so long now I have been wishing that he could make friends with some more of the kids in our neighborhood– especially the group of kids in the court down the street. I’ve mentioned them before, and there have been times when I thought he had been accepted into their little clique, but with the exception of one nice younger boy, the group has pretty much snubbed him (none of them are pictured above and were not invited to his party).  For awhile this bothered me, but looking at this picture I had what you might call an epiphany– for the past year I have been subconsciously wooing those kids in the court with fun parties and invitations, and you know what? Most of them are little turds. They bully the nice kid I mentioned, and I’ve learned through Jay that they’ve said some unfriendly things to him as well. Never again will I encourage my son to try to play with them, to make friends. They should be so lucky to have him for a friend.

As a child, I was painfully shy and often lonely. I feared that Jay would have the same experience, probably even a more difficult one because of his hearing impairment. I’ve always tried to please others because of my low confidence, and I think I’ve projected some of that onto Jay. I admit, in the past there have been times when I have discouraged behaviour in Jay that I thought others would find “weird,” and tried to encourage him to be as much like his peers as possible. Just seeing those words in black and white makes me cringe. Where is the girl who idolized the misfits in all those Molly Ringwald movies? I once scorned everything “normal” and mainstream, and yet here I was pushing my kid to fit in as much as possible. I guess I just wanted to protect him as much as possible from the rejection of others.

But you know what? He’s great, just the way he is. I don’t want to give him the message that he should change, that there is something wrong with him, just because others can be narrow-minded or cruel. It’s their problem, not his.

As my husband so eloquently put it, “Geez, you act like we have to tie a pork chop around his neck to get other kids to play with him. He’s got friends, he’s fine.”

Yes, he is. And any kid that can’t see that and doesn’t want to be his friend? Well, that kid can just bite me.