Thursday, February 25, 2010


So, this is going to be one of those posts that is based purely on personal experience. But isnt that part of the beauty of this blog!? : )

For as long as I can remember Toby (this is Kari writing) has been shockingly sensitive to noise. I'm talkin horribly so. We would go out to somewhere like chick - fil -a and at about 12 months old he would scream and cry and act scared to death. We would sit close to a kitchen and any noise would make him break down. A plane flying overhead would send him into out of control tears. Dont even get me started on playgroups. Loud laughing, crying, singing, banging toys (all which happen at playgroups) would make him terrified.

After about 2 and a half years of this I thought I might just go crazy. It had gotten slightly better. But my three year old little boy still couldnt handle if a loud car would drive by as we were getting out of the car. He throw his hands over his hear and say, "It's too loud." We became very accustomed to this phrase. After mentioning some of these issues to our developmental specialists and him telling me, "Toby is a charming young man, who is doing wonderful, I dont see any cause for concern." Granted there wasnt any loud noises going on at the doctor's office. I really thought either Toby was losing his mind or I was surely going to.

I struggled between discipling him for bad behavior, trying to teach him to be brave and be just plain frustrated.

Until, I found the power of "google" I am not a strong believer in googling for medical advice. But I really was getting desperate. the first thing to pop up was this from the spina bifida association. It really is hard to find stuff on this, but you just have to keep digging. After reading about hearing sensitivty in shunted individuals for about the duration of an afternoon nap I felt like a weight had been lifted off my shoulders.

My child was not "bad" I was not a failure as a parent. He was not having major mental issues that the doctor's just hadnt told me about yet. He was just sensitive to loud noises and all because of his shunt and hydrocephalus.
Wow!!! I almost did a dance. (almost)

I wanted to write about this today because I can remember feeling so lost with Toby those first couple years. So overwhelmed when it came to this issue. And there was an answer. I was just unaware of it. This doesnt affect all kids that have shunts, just some of them. Toby's hearing sensitivity didnt get better over the course of that naptime reading, but I became to understand him more. To understand that something seemed way louder to him than it did to me and that was okay.

That afternoon something that was shaking up our little life became okay and just became another little mountain that I started climbing with him. The mountain just finally had a name, "Hearing Sensitivity"

1 comment:

Cassie said...

Oh my goodness Caleb is the same way! He is sooo sensitive to loud noises, it has gotten somewhat better as he has gotten older but it is still an issue. Poor things has such anxiety about it too, if he knows we are going somewhere that might be loud he becomes panicked. He always asks "Will it be loud there?" We went to a restaurant recently and the waiters sang "happy birthday" to someone and Caleb lost it. For the longest time I didn't know what was wrong with him but I finally read about hydrocephalus causing it and it gave me such peace about it. I never wanted to get on to him for something that he couldn't help. Our kiddos brains are just different and who knows what it feels like to be them and what certain sounds sound like to them. I've learned to be patient with him even when he is freaking out in the middle of a restaurant, so what if people stare!? Oh, we tried to see a movie at the theater once....bad idea :)