Noise
Last Sunday we attempted to attend church. The experience was discouraging, to say the least. I hesitate to write about the experience in my normal Technicolor detail, as I don't feel it is absolutely necessary therapeutically, but it bothers me still, so I feel like I should write and see what happens.
While Erik seemed to do quite well in the nursery at church at first, things have definitely taken a turn. The last time we went to church, we found him afterwards in a quiet room playing with one babysitter because the noise inside the nursery had upset him. This type of noise is just too much for his sensitive hearing to handle. He shakes like a leaf and ends up being absolutely inconsolable. While it is beneficial to expose him to some noises out and about, there are definitely some noises that remain absolute torture to him, and the look on his face makes it quite apparent to everyone he is almost in pain and needs to be removed from a situation. You may remember my trip to the computer store a few months ago. Things has really improved in this area. Just yesterday we were at a department store that was undergoing some remodeling, and the scissor lift hoisting men up to the ceiling to work on wiring emitted an ear-piercing series of beeps. Months ago, I would have had to abandon my shopping cart and cut my trip short, but he was fascinated by this piece of equipment and was happy watching it operate, allowing me to leisurely browse through the store while he watched the men work. I was pleased.
Sunday was a different story. I took Erik to the nursery while Brian and his parents found a place to sit. It might have been my imagination, but for a split second I saw something cross the fresh face of one of the two teenage girls working there. I could swear I could see her thinking, "Oh no. Here they come again." I asked if she remembered Erik, and she very quickly said yes. A baby began to screech, and it was instantly all over for Erik. She very unenthusiastically offered to take him to a private room again, but since there were several kids there and only two of them, it didn't make much sense to me, and I said I would sit with him myself and see how things went. That was pretty much the last either of the two girls said to me. It was quite obvious the situation was not going to improve as the screeching from the poor infant continued, and I had a thick sheen of Erik's snot on my blouse. He continued to sob. When it got quiet, he would stop briefly and open his eyes but seemed to remember what had happened and sobbed once more. The baby would cry again, and his sobbing would intensify. He frantically pulled at any loose skin on my neck and seemed to try to climb inside my clothes. I shrugged, smiled, thanked them, and left with Erik. We headed down the hall to the children's chapel, a room that overlooks the sanctuary through a pane of thick glass for the comfort of nursing mothers. The room was full of (you guessed it) more children. Well, that wasn't going to work. Defeated, I found a chair next to the coffee and cookies in the wide hallway. Brian, who was sitting somewhere with his parents inside the sanctuary, apparently ended up vaulting the back of the pew he was sitting in Mary Lou Retton style and scurried out to find me when I failed to return from the nursery in a reasonable amount of time. Brian and I ended up sipping fresh coffee in the hallway halfway attempting to listen to the sermon while we tended to a now happy, hyperactive Erik at the same time. It ended up being a colossal, upsetting waste of time. I couldn't even tell you what the topic of the sermon was. Having awakened for the last time at 2 or 3-something in the morning for the third morning in the row was not helpful, either. I felt fuzzy and unprepared to deal with this situation.
There are times when it seems there is no place for us to just be, bringing on the memories of isolation I once experienced when my infant screamed in agony for months at at time. Now that things are different, Erik would be a complete happy disaster in the sanctuary around adults but still detests being around unfamiliar babies or children who make noise.
Now what?
Things are better. In fact, everything is wonderful a lot of the time. I know everything will continue to improve if I'm patient.
There are times, though, I still cry in a parking lot here and there.
While Erik seemed to do quite well in the nursery at church at first, things have definitely taken a turn. The last time we went to church, we found him afterwards in a quiet room playing with one babysitter because the noise inside the nursery had upset him. This type of noise is just too much for his sensitive hearing to handle. He shakes like a leaf and ends up being absolutely inconsolable. While it is beneficial to expose him to some noises out and about, there are definitely some noises that remain absolute torture to him, and the look on his face makes it quite apparent to everyone he is almost in pain and needs to be removed from a situation. You may remember my trip to the computer store a few months ago. Things has really improved in this area. Just yesterday we were at a department store that was undergoing some remodeling, and the scissor lift hoisting men up to the ceiling to work on wiring emitted an ear-piercing series of beeps. Months ago, I would have had to abandon my shopping cart and cut my trip short, but he was fascinated by this piece of equipment and was happy watching it operate, allowing me to leisurely browse through the store while he watched the men work. I was pleased.
Sunday was a different story. I took Erik to the nursery while Brian and his parents found a place to sit. It might have been my imagination, but for a split second I saw something cross the fresh face of one of the two teenage girls working there. I could swear I could see her thinking, "Oh no. Here they come again." I asked if she remembered Erik, and she very quickly said yes. A baby began to screech, and it was instantly all over for Erik. She very unenthusiastically offered to take him to a private room again, but since there were several kids there and only two of them, it didn't make much sense to me, and I said I would sit with him myself and see how things went. That was pretty much the last either of the two girls said to me. It was quite obvious the situation was not going to improve as the screeching from the poor infant continued, and I had a thick sheen of Erik's snot on my blouse. He continued to sob. When it got quiet, he would stop briefly and open his eyes but seemed to remember what had happened and sobbed once more. The baby would cry again, and his sobbing would intensify. He frantically pulled at any loose skin on my neck and seemed to try to climb inside my clothes. I shrugged, smiled, thanked them, and left with Erik. We headed down the hall to the children's chapel, a room that overlooks the sanctuary through a pane of thick glass for the comfort of nursing mothers. The room was full of (you guessed it) more children. Well, that wasn't going to work. Defeated, I found a chair next to the coffee and cookies in the wide hallway. Brian, who was sitting somewhere with his parents inside the sanctuary, apparently ended up vaulting the back of the pew he was sitting in Mary Lou Retton style and scurried out to find me when I failed to return from the nursery in a reasonable amount of time. Brian and I ended up sipping fresh coffee in the hallway halfway attempting to listen to the sermon while we tended to a now happy, hyperactive Erik at the same time. It ended up being a colossal, upsetting waste of time. I couldn't even tell you what the topic of the sermon was. Having awakened for the last time at 2 or 3-something in the morning for the third morning in the row was not helpful, either. I felt fuzzy and unprepared to deal with this situation.
There are times when it seems there is no place for us to just be, bringing on the memories of isolation I once experienced when my infant screamed in agony for months at at time. Now that things are different, Erik would be a complete happy disaster in the sanctuary around adults but still detests being around unfamiliar babies or children who make noise.
Now what?
Things are better. In fact, everything is wonderful a lot of the time. I know everything will continue to improve if I'm patient.
There are times, though, I still cry in a parking lot here and there.
Labels: hyperacusis, Williams syndrome
posted by Nancy at 7:40 PM
12 Comments:
I am so sorry that it has been so rough. It really does get better with age. Church is hard though, it is for us too. Abi would rather be with the adults but the music is so loud and lets face it...she can't sit still!
In the same boat!
Noel
Man, I can relate to this post. We try to go to church as often as we can - but never are able to through an entire service. Noise is just too much for Payton. You're right - things get better with time, however, there are still times I feel so isolated (not as much as when Payton was a baby) but I do still feel alone alot.
FIRST OF ALL, BEING ERIK'S AUNTIE I AM A BIT TROUBLED THAT THESE VOLUNTEERS IN YOUR NURSERY GAVE "THE LOOK" WHAT EVER THAT MIGHT BE WHEN ERIK CAME IN TO THE NURSERY! I AM GLAD I WAS NOT THERE, WELL, I GUESS I WISH I WAS THERE, ERIK AND I WOULD OF PLAYED IN THE "HALLWAY" AND ATE DOUGHNUTS! :)
PERHAPS ERIK NEEDS TO GO TO SUNDAY SCHOOL INSTEAD OF THE NURSERY? DOES YOUR CHURCH HAVE A SUNDAY SCHOOL PROGRAM FOR ERIK'S AGE? HE JUST SEEMS SO BIG TO BE HANGIN WITH NOISY BABIES! PERHAPS YOUR CHURCH WILL MAKE AN EXCEPTION TO ERIK AND LET HIM BE IN ANOTHER CLASS, AND I BET A KID OR TWO WOULD JUST EAT UP ON THE IDEA OF HELPING ERIK IN THAT CLASS! OLDER KIDS LIKE TO HELP YOUNGER KIDS... JUST SOME IDEAS...
TIMES LIKE THESE JUST BREAKS MY HEART... NO ONE SHOULD FEEL LIKE YOU DID, ESPECIALLY IN CHURCH!!!
WHERE WAS GRANDPA AND GRANDMA P? I AM SURPRISED THAT AT LEAST GRANDPA DID NOT COME OUT AND EAT DOUGHNUTS WITH YOU ALL! AT LEAST HAVE COFFEE. :)
LOVE BRIAN JUMPING OVER THE PEW RETTON STYLE...WHAT A DADDY TO COME AND CHECK UP ON YOU TWO AND THEN STAY WITH YOU GUYS! YOU THREE MAKE AN AWESOME FAMILY!!!!
BIG HUGS!!!
DAWNITA
I am so sorry it didn't work out for you. Hopefully he will outgrow this soon. I do have a suggestion though. You could maybe try a smaller church. My old church had a very small congregation and we were lucky to have 2 or 3 kids in the nursery. It is just an idea. Hang in there.
Nance ~ I love this attitude! "I know everything will continue to improve if I'm patient". Because I know you are RIGHT! ~ jb///
Hey you :) Brady does OK sitting with me at church until his brother the altar server rings the bells... and then grins like a little serial killer when Brady cries. At this point I usually just take a quick walk down the hall and back. We don't have a crying room because our church is small, so the kids in church are more or less pretty well-behaved because they have no where else to go ;)
I agree with Julie, unless you love your church. Are you not bringing him to sit with you for any particular reason? Nobody expects kids to be little angels in church pews.
Life with a WS child is just one big compromise after another, please don't feel defeated. I am not saying it is easy or no big deal, I just think everyday is a a test for us mommies to come up with things that our children can do, and can excel at. Keep looking, I am hoping you will find your niche and Erik's as well, in the world...and it isn't being by yourself at home. At least that is what I hope will happen for all of us.
XOXO
Amy
Auntie Cinnamon -- Erik qualifies for Sunday school as of last Sunday. BUT it's full of kids again, bringing up the same exact problems. He would definitely NOT like another child helping him, either. I'm not saying we won't give it a shot, but why torture ourselves when he is getting enough exposure to kids at preschool? I'm still trying to find what works, and it will take some time. This might be skipping church for the time being. I'm sure that various people may think ill of me for even saying this. Hopefully they will learn to support Brian and I no matter what we decide to do, as most of our friends and family do. We will ensure Erik has a personal relationship with God no matter where we end up or what we do. If there's one thing Erik has taught me, it's that it's okay to think outside the box and do what works, even if others don't necessarily approve. I fail to care about that any more -- it just sucks the life from me in the long run, which does not benefit Erik at all. He needs a happy mother.
P.S. Wish you were with me, too.
Everybody else -- I do love this church. It is small, but it only takes one kid to ruin a morning for Erik, so it wouldn't fix anything to switch. My kid does excel at things other WS kids struggle with, but this is one area he seems to be worse in than the rest. It is a serious problem. He wouldn't last 5 minutes in the sanctuary because he would be too disruptive...he would talk through the entire thing. Once we get to a certain point, he'll probably be okay, but he doesn't understand "be quiet" quite yet. :) Thanks for your support. I love you guys.
Awww, honey, I'm so sorry.
Thank you so much for both you and Erik lifting us up. I appreciate it so much.
Big hug to you both.
I am with Erik!!! Who wants to be in a room of screeching babies and toddlers!!! I vote for sunday morning walks at the river! You can have your private church service there! Bring donuts and coffee. Then next year try the church again see how it goes. I say if it isn't working find something else. We tend to make ourselves crazy trying to do all the right things in life with our kids. My now 5 yr old PRINCESS ANGEL child was a holy terror when she was One, two and three!!! Ask Heid!! I would cry because we could not take her anywhere she was sooo dang mean and bratty. She even almost got kicked out of daycare she was sooo mean. Now I swear she work up at four years old and became the sweetest most loving child ever. I adore this sweet thing! But when she was younger I had to change so many things we did. I am glad now I changed them and quit making myself nuts! Hang in there Nancy I bet every year things will get easier. Maybe noise will always be a problem for Erik but maybe later on he will be able to deal with it in better ways. Poor guy I would have cried too being stuck in there! LOL!!!
Hey, you do whatever you need to for your family - it is no one else's business. There were defintiely times when Michael was little that we didn't go - and I am sure there will be some Brady times in the future too. Your faith, your religion, your relationship to God is what you make of it, not whether or not you score points for getting to mass. (Although I am telling Michael that now because he's 9 and complaining about going. He only behaves when he's on the altar serving - -so guess where he is every week? :)
I'm sorry it was such a stressful day. Kayla can't sit still either and I get so frustrated...I try to avoid taking her shopping with me, I don't enjoy eating out. We tried soccer and the first day I left and broke down crying on the way home ... she has so much energy, can't sit still and pay attention and focus and stay on task (I don't know how she does it at school!) Anyway, didn't want to take over your post, just to say I understand!
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