Friday, August 09, 2013

Special Needs

The term special needs to me is an umbrella term that covers SO many different things! Miriam-Webster defines "special needs" as: the individual requirements (as for education) of a person with a disadvantaged background or a mental, emotional, or physical disability or a high risk of developing one.
That is a very broad definition!
How did we get on this merry-go-round?
This is our story:

Our DD was born with a moderate hearing loss. A lot of people asked how we found out - she failed her hearing test at birth and another one at 10 days old. Thus, began our journey. We were scared at first and did a little crying and worrying, but then realized that if this was the worst of our obstacles, she (and we) would be fine!  Let me tell you, there was A LOT of frustration for us the first few years. We just went through our regular developmental evaluations and hearing tests.

At about four, her hearing loss went from moderate to severe/profound. I was devastated! I just remember crying when they told us it had taken a big downward turn. But again, you learn to plug on and take each day as it comes.

We went through all the applications of assistance and different agencies we were referred to. We filled out application after application for five years and were always told the same thing, "You make too much for us to help you." Then we would hear from her hearing mediators, "Have you thought about hearing aids?"  Well....ummm - YES!  However, until $5,000 falls in my lap, it's not going to happen - SADLY!!!!!!!!!  I wanted more than anything to be able to give her the gift to hear things that so many of us hear (birds, leaves rustling, lighter - more high pitched sounds).

She finally started kindergarten, about halfway through the school year her school hearing itinerant referred us to an agency we had not tried or heard of. So, we shrugged and figured - let's give it a try. We applied and fell into a bed of roses.
FINALLY - someone who would be able to help us!
We had to do LOTS of paperwork and provide LOTS of proof of LOTS of things but each step forward we made, felt like a victory.  DD used an FM system through most of kindergarten and found that it helped tremendously, especially in hearing her teachers and when working with small groups of her classmates.
Enter, 1st grade - September, 2010 - this glorious day (WOW!) arrived. It was a day of happy tears and what felt like a miracle. She became a different kid - she heard more, seemed to participate more and be more tuned into the world around her. It was SO fantastic! There are days it still amazes me. She called me from school about a week after she got her hearing aids (with her hearing itinerant) to tell me she heard a bird chirp when she went outside with Ms. M. I think I just sat and cried for about 5 minutes after I hung up with her, then called DH to tell him!

She has become very independent and takes care of her hearing aids well. We are still working with the same agency and they continue to be supportive and helpful.

This photo is what 9 1/2 years of meetings, IEPs, appointments and correspondence looks like (believe me - that briefcase weighs a ton).

I wouldn't trade this road for any other and am grateful to all who have supported and helped us along the way!

4 comments:

  1. Wow wow wow ... what a touching and beautiful story ... thank you for sharing it!! So happy someone was FINALLY able to help you!!

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  2. An amazing story and I'm so glad you finally got help. Hugs and prayers.

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  3. Anonymous7:23 PM

    We are so happy that Sara (and you) got the help you needed because those hearing aids have made a huge difference. It also makes me wonder how many others are out there who still aren't getting that kind of help and obviously need it. Kind of a sad state of affairs in our health care system, isn't it? Thanks for sharing your story.
    Mom

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  4. What an incredible story! You had me tearing up. Thanks for opening up, and I wish you well on your continued journey. You guys are awesome parents, and GO DD, GO!

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