Erik Quinn: The Heart of a Family: Cacophony

Wednesday, October 31, 2007

Cacophony

Erik's week has been rough around the edges. He now sobs each time we drop him off at school or daycare. Yesterday it was obvious to me he was delaying his entrance into the school building by allowing himself become distracted by his surroundings and hoping I would play along. He drug his feet as he craned his neck to watch the buses wheeze to a stop in front of the school. He became visibly frustrated and angry when I tried to drag him into the building. He began falling all over himself, trying to sag to the pavement, and I carried him for the very first time into the building. By the time we entered the classroom, he had wrapped both of his long legs around me and was trying to scale my body like a koala bear climbs a eucalyptus tree. I could hardly pry him off of me long enough to set him on the floor and ended up drooping to the floor with him for a time to watch the other children playing without a care in the world. I finally peeled his coat off, hung his backpack in his cubby, and took him to a fairly quiet, kid-free spot in the room. When I left, he was red-faced and bawling once again. I winced at a nearby staff member and made my exit.

Normal things children enjoy seem to be the worst kind of torture to my son.

I don't have much of an option except to shield him from the world, which isn't practical. I spend enough time running the food processor in the bathroom or in the garage, muting the television when there are noises that seem to scare him, and keeping away from extra situations with children that we can avoid without any consequences.

After a police car with its siren blaring whizzed by our property last night, Erik began screaming in agony in his little bed. I ran into his room, turned on the light, and crawled next to him. His tears would stop and his chest would cease heaving eventually, but each time I tried to leave him, he would begin talking of sirens and fire trucks, and the sobbing would begin again. I let him cry himself to sleep, which seemed like it took forever but in reality took only a few minutes. Brian and I went back to watching the season premiere of one of our favorite shows. Eventually there was a commercial featuring the sound of (you guessed it) police cars. I tried to lunge for the remote, but was too late. The screaming began again.

I think his hyperacusis is, if anything, worse, especially as it applies to other children. I would now classify this problem as severe and debilitating. It is now paired with an intense, expressible anxiety that seems to have him in a death grip. While the noises of laboring heavy equipment do not seem to affect him as they once did, being around other children is becoming even more difficult. I am beginning to feel isolated once again. It's hard not to feel like a complete freak show this way.

I consulted my book, Understanding Williams Syndrome, last night as we went to bed. As I cracked it open, I informed Brian that I intended to understand Williams syndrome RIGHT NOW.

We both laughed.

The book was reassuring, although it doesn't solve any of my problems at the moment. Hyperacusis has been studied, and there seem to be absolutely no anomalies of the ears in WS. Therefore, his ear anatomy is likely perfect. Something in his brain scientists have yet to completely understand makes it difficult for him to process noises. The same brain malfunction also renders it easy for him to complete the lyrics to the song "Glamorous" by Fergie out of the blue when I'm singing it preparing dinner. It's a curse and a blessing at the same time. It was also quite clear in the book that this is not a ploy for attention and is undeniably real. Only time will tell if it fades as he grows or remains with him his entire life. It is so severe at this point, I doubt it will ever completely resolve. There were coping techniques listed in the book, but most of them were for slightly older children and adults. What was reassuring to me was that it was obvious we were doing everything correctly. I now feel like it's perfectly acceptable to use what they called "environmental controls," removing upsetting noises like noisy appliances, as we have done for three years. It said absolutely nothing about toughening up a child by exposing him to noise. It's pretty apparent to me that this wouldn't work, anyway. I read about acknowledging a noise, offering reassurance regarding it, and explaining where it comes from. I am doing all of these things, although Erik becomes so upset that I sometimes can't reach him through his agonized yowling. I keep talking, anyway.

We were invited to attend a meeting Saturday night about youth ministries at my church to give us an opportunity to express our dreams for our children. I have sent a letter giving them advance warning I will be asking questions about children with special needs and explained our trouble attending church. I was honest and wrote that I was fresh out of ideas. In the meantime, we will attempt to attend Halloween festivities with Erik's friend Dominick and his family, but I wonder if that will become torture as well. I'm willing to make an attempt, though, in case he enjoys himself. Kathy has already warned us their home is slathered in decorations, some of which make frightening noises, and offered special instructions on how to enter their house in a quiet fashion. While this problem remains tragic and debilitating to our family, I would be lying if I said this didn't make me giggle a little.

Sometimes you just gotta laugh.

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18 Comments:

Blogger Tara said...

You said it best - you just have to laugh. Payton has problems with the noise as well - but hers isn't around other children...it's usually some time of appliance (vacuum, blender, mixer) or clocks and toys that make noise. Quite frankly, it stinks. You never know when you go to different places what you might come across that will send your child thru the roof. It's exhausting and isolating (I can't believe how long it's been since I've gone out to eat with my family....you can't go out to eat with dishes clanging...you know?). Hang in there - and I'll be thinking about you. It would be quite difficult to have other children causing such problems for Erik....that scenario would most definitely be isolating. Hugs, Tara

7:40 AM  
Anonymous Gua said...

This just rips my heart out. It's so puzzling that Erik will insist that Boppa go to YouTube and find fire trucks, engines screaming, but it terrified of sirens. I'm so glad you have the WS book and at least can know that you're doing the right thing. That's all any of us can do.
We love you all.

Mom

7:58 AM  
Blogger THE PASLAY'S OF MOUNTAIN HOME said...

THAT'S IT!!! I AM GOING TO BE A HOMESCHOOLIN AUNTIE AND ERIK CAN STAY WITH ME!! :) EVEN IF WE LIVED A TAD BIT CLOSER I WOULD HAVE HIM COME AND HANG WITH ME! YOU SOOOO KNOW I WOULD!!!

AND HOOOOOORAY ON THE MEETING AT CHURCH! I HOPE THAT THEY COME UP WITH SOME AWESOME IDEAS... NOOOOOO "ANSWERS" FOR KIDDOS WITH SPECIAL NEEDS!!!!

ALWAYS REMEMBER...YOU ARE A GOOD MOMMY AND YOU ARE DOING THINGS SOOOOOOOOOO RIGHT! I LOVE YOU GIRL!

AND GIVE THAT SWEET BOY A BIG AUNTIE HUG AND TELL HIM HAPPY HALLOWEEN FROM US ALL!!!

BIG HALLOWEEN HUGS,
AUNTIE CINNAMON

8:43 AM  
Blogger Laura said...

Yep, just gotta laugh...if we didn't I think we'd loose our minds!!
I don't have any solutions, just the knowledge that you are not alone. Michaela has a complete panic attack when she hears people cheering and clapping....she physically shakes and cries with her hands over her ears, those are the reality check moments.

9:01 AM  
Blogger Nancy said...

Tara -- The book mentions taking our children on a "tour" of a restaurant to identify the source of noises. I suppose that might work later on. It's easy to scoff at the ideas but if it means we get out of the house, it's worth a try. We went to a place that made milkshakes once. That was not pretty. Thanks for your comment!

Mom -- It's strange how kids with WS are obsessed with finding what is upsetting them, but it is documented that they do this and become obsessed. I don't understand it, either. Love you!

Auntie Cinnamon -- I love you, too! Can't wait to see you. I hope I don't end up spearheading a campaign for special needs at church, but I guess my mind is open. I also wish I liked children better! LOL

Laura -- It's nice to know that we are not alone. :) :) :)

9:13 AM  
Blogger Amy said...

I feel for you and Erik, this is an amazingly debilitating medical issue and I am glad you approach it as such. It is a lesson for us all in understanding our children (that some things are biological, not behavorial). Good luck on your quest in dealing with it, Avery does not have severe hypercusis, it is very minor, although it is there. I worry that it will get worse and evolve into severe anxiety issues. She is now afraid of balloons due to 2 incidences with the helium tank. Once with me, and then her grandma took her to the store and guess what, wanted to buy her a balloon and after that balloons are off limits. So no point in my story other than I can barely relate, but support you in saying it sucks. XOXO
Amy

9:48 AM  
Blogger Heather said...

Nancy, I don't know if it will get better for Erik.It may or may not. I do know that when Caleb was little, I had no idea that it was the noises freaking him out. But, it really was. I couldn't understand why he would scream at the slightest 'strange' sounds.
I do have to say though that now that Caleb can identify a lot of these noises, he doesn't seem to be quite as bothered. He is however obsessed with the things that used to scare him. Sirens, motors, Alarm clocks, etc....
It has only gotten better, hyperacusis-wise over the last couple of years. It has gotten worse in the respect that he is now preoccupied with these things.
I heard that many of our kids with WS do get desensitized eventually. I just can't say that it is for the better. I do hope that these obsessions get better as the hyper sensitive hearing did. I'm sorry that I'm a downer. I just try to relate my experiences. I hated going through all that crap alone. Never knowing what to expect.If you would rather have me not comment, please let me know. much love, Heather

11:08 AM  
Blogger Julie said...

If I didn't laugh sometimes I would lose my mind. Although this isn't just Noah's fault, he does have older sisters who definitely make me feel like I am losing my mind. :) I feel for you. Noah used to really lose it at any kitchen noise, even getting pans out of the cupboard. I think he has outgrown alot of it frankly because it is never quiet around here. It is sometimes pure madness. Anyway, when I try to run the coffee grinder or blender I just remember to smile at him while I am doing it at I think that is enough reassurance for him, for now anyway. Good luck trick or treating. Hope you guys have fun.

11:28 AM  
Blogger Kerry said...

:( I have no words of wisom other than it just bites. I hope you find some answers. Can you give him headphones for the times you want to go to certain places, like church? Headphones are cool - everyone seems to be wearing them attached to their IPod.

Thinking of you~ love you!

12:08 PM  
Blogger Every minute counts.... said...

Abi too has some of the hypercusis but it seems not near what you have been handed to deal with. She tends to work it out herself most times. I have questioned the hearing tests they do...I think her hearing is getting bad, they say she is just adapting to noise...don't totally agree with that but what can you do...
Have you thought about the noise blocking headphones? Is that something that Erik would even put on( Abi won't put anything on her head). Maybe it would be worth a shot to give you some ease is situations you can't control and it would teach him that if he was scared put them on himself.

I love that book...it took me a couple of times to re-read it before some of it sunk in but it was helpful.

Noel

1:01 PM  
Blogger Kim, Grandma to Ava,ws said...

Just before I checked in on your blog I was thinking how happy I am that Erik is doing so well and that you have healed so nicely. Now this! Since I have no idea how to deal with hyperacusis, I will just send along my support and a virtual hug for all of you.

Ava doesn't have a problem with sirens or machines, but she cannot stand to be around groups of noisy people for long. She hits people, pets, and will try to knock off your glasses or necklace. It's so sad that our 19lb princess has such anxiety. Williams Syndrome is a cruel taskmaster.

*thinking of you*

Kim

1:40 PM  
Blogger All moments remembered said...

Laughing is sooo often the best medicine for many things! I think of you all the time and wish you tons of happy wonderful days!! As always Nancy I send you hugs and super big hugs to Eric!!!
Stacey

6:35 PM  
Blogger Rosemarie said...

Humor can be the best medicine for challenging circumstances.

I do hope that Erik's anxiety over sirens lessens, and that you can both take a deep breath and sleep soundly.

9:19 PM  
Blogger Katie said...

Oh Nancy, it sux.
Its amazing how acutely aware of sounds i have become since having Jai and his Hyperacusis isnt 1/2 as bad as Eric's, i now too notice every little sound and feel like i am constantly screeing his face in case of a reaction.
I was speaking to my sister in law who also has hyperacusis and as a child she remembers it being absolutely debilitating, she said over time she kind of 'adapted' to the sounds because she had to, and now she doesnt really notice it much - unless she is upset or really tired then it comes back.

2:56 PM  
Blogger kathi said...

...and sometimes you've got to laugh...a lot. :)

5:57 AM  
Blogger Lizard Eater said...

This has to be so frustrating for you. I think that for parents of non WS kids, there comes the point where you say, "Okay, you just have to get over this." And they do okay, thus validating your instinct.

For a WS child, I would imagine you're having to go against your instinct?

I think I would have a lot of anger in this situation.

1:37 PM  
Blogger Leslie said...

So, so well said. It is physically painful sometimes...I just wish every blessed thing wasn't an issue. I get so discourages sometimes when I think...will it just get worse? Or will there be a day when it just isn't so HARD?

I hope your church has a plan for Erik. We have been blessed with Jack's Sunday school teacher- whose son just happens to have Down syndrome. She was a big factor in us joining our church.

I am soooo hoping that this screening will be the step in the direction of answers. I am slowly sinking and working with children that are his age every day is wearing me down. It physically hurts sometimes to hear the things they say and see the things they are capable of and think, "Jack is a month OLDER than them and isn't doing any of that..." That's when I have to start counting my blessings and not dwell. Which is easier said than done.

8:35 PM  
Anonymous Anonymous said...

Maybe try some foam earplugs? I dunno if those are frowned upon in little kids, but they might be worth a try. They don't block out all sound, but they do soften it.

6:09 PM  

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