Emma is always asking me why there aren't more posts about her. I told her they were coming...I just didn't realize it would be like this.She has been diagnosed with a bilateral hearing loss in the mid frequencies. This means that she has lost some hearing in both ears, in the range that people normally speak in.
So far, the loss is mild, but the doctors think is it possible (perhaps even likely) that her hearing will continue to get worse, and that it may be quite some time before the hearing loss stablezies.
I know that it isn't the end of the world. And I know that for all the problems that she could have, this one isn't the worst.
BUT she is MY child.
The hardest part was when the doctor allowed me to hear like she hears, and even with a mild loss, she misses a lot.
Imagine walking around with your fingers in your ears, trying to hearing everything that is said around you. If it is quiet, it probably isn't too bad, but add some noise (like 25 other 3rd graders) and you are going to miss more than you realize.
And now, as we now go through the process of fitting her for hearing aids and making accomodations for her at school, I can't help but feel a little...lost.
We met with the school and I spoke with a school district hearing specialist...and so much of it didn't seem right to me. It felt like they spent more time talking about what they couldn't do for her, than what they could.
Basically, what they said was, until she starts to fail they can't help her.
WHAT?!?
Because she is currently a good student, there isn't much they are REQUIRED to do. They are only required to provide services to kids who are doing poorly.
Now, I understand part of this. There are limited resources, and you can only help so many people. But even if all they said was, "We are going to assign someone to monitor her progress, and if, in the future, she needs help, we will be there," I could have at least felt good about that.
Instead I am left to feel like we are in this alone and the school is relieved that this isn't their problem yet.
Luckily, Emma has a really good teacher who I think will work with us...and we will get a little more educated, and do a little more educating.
Because, by golly, THIS IS MY CHILD.
11 comments:
Hey Denise. Long time no see. I found your blog through Hilary's. I can't believe you have six kids...your my hero. Good luck with this new challenge.
Does uncle Steve have to come out and straighten out the school board on this special problem? Dont take we cant do anything until.... this is my little niece to and its battle time.... i love you all and missed coming out with Paulette but i was running a fever and didnt feel well at all. All of you are in my prayers LOVE YOU ALL TONS.
I know how you feel - Bronson was officially diagnosed with Asperger's Syndrome (a social disorder that falls on the autism spectrum)a couple of weeks ago, and it seems like my world has been turned upside down ever since. In some ways it is a relief to discover what's wrong, and yet saddening to realize that you have a child with a permenant condition that can't be "fixed" with medicine. As far as school goes, did anyone mention setting up an IEP (Individualized Educational Plan) for Emma? This would provide the tracking or monitering that you'd like, and it should be available if a medical diagnosis has been made. Legally, every child with special needs has the right to assistance for their education. I know some schools put up a fuss about an IEP; there is also something called a 514 (think that's what it's called, will need to check) that the government has put into place to ensure these kids get the help and consideration that they need in while in public school. I know that it's a confusing time and some frustrations will come along the way, but hang in there - Emma needs you as her advocate :)
I wish I had some advice for you. Looks like you are already getting some, I'm glad. The more you know the better the situation will be. Knowledge is power, especially when dealing with red tape.
Know that we will keep Emma in our prayers.
DId Emma like her post? I agree wit h getting an IEP for her. And keep fitting--I know you've got it in you!
If anyone can handle it, it's Emma...and you! I'm sorry that the school isn't being more cooperative. You're in our prayers.
I really don't know what to say. I am shocked by the response you got from the school. We'll keep precious Emma and all of you in our prayers!
I am always amazed by how many of my friends have some sort of hearing loss -- they obviously cope very well.
A good teacher is worth their weight in gold. I know Conner's teacher would study the hearing loss and work with him. Make sure you always remind the school of her hearing needs before they assign her teacher (aka, before you get the loser teacher).
Emma's a special girl in lots of ways. She'll rise to meet this challenge and use what she's learned to fight every battle she may have in life.
You and Troy are excellent parents and Emma is a smart, lovable, special little girl. She has gotten this far with hearing loss and managed beautifully- imagine what she'll be able to do with hearing aids! Try not to worry about the future- everything will work out.
Both of my kids are deaf but wear cochlear implants after wearing aids for the first couple of years. They are seven and four now. Neither of my children have any speech delays and are at or above grade level. My son is seven and his vocab tests show that he's at age 13 in language. HE STILL IS DEAF though and your daughter still has a hearing prob...bottom line. And I would require them to purchase her an fm system to help her hear even better in the classroom. You need to sign up w/a forum called Listen Up...go to www.listen-up.org ? I think or google it and they even have a lawyer on board there, they are very familiar w/laws and can provide lots of info. Good luck
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