Ok, so this may just be me being me, a little bit crazy. I just want to help and make the world a better place. I am trying to use my new found freedom to figure out where I fit in this place. And one thing that I have always wanted to do is find out a way to help my community.
Some background...about 3 years ago, we found out that Brianna was hearing impared. We found that one ear was completely deaf, and the other was in need of a hearing aid. I also found out that my insurance company doesn't provide assistance for that hearing aid. I had to come up with $2,000 just for her one hearing aid. I am a divorced mom of 4, who was not receiving much help from dad, I worked full time, but making next to nothing after paying for daycare and medical insurance through work. I was shocked at this price. There were no government programs to help me. I made too much for Brianna to go on Medicaid, and too little for me to be able to afford this right away. And right away is what Brianna needed. So I reached out to the community. I received help from the Lions Club and Brianna's Elementary school. I borrowed what was left, and we got her the hearing aid within about 1 month.
One thing during this whole process that just upset me more and more was that there wasn't help for Brianna. There wasn't someone I could turn to and say, hey, this is a child. She NEEDS this, and I don't have the means to help her. The Lions club did help, I don't want to discount that at all, but it took a lot. They criticized me because I had a newer car, I didn't own it, but I had a loan out for it, they made off the wall suggestions like asking her father for the money (her father withdrew himself from her life years ago, after our divorce). After a lot of crying, pursuading and heartache, they did come through for us. But what about that mom or dad or family out there that just can't find where to turn? What about those people that take the first "NO" they hear and give in to the helplessness? What about those children who have to wait months or years for their family to save the money to get them the hearing aid that they deserve and need?
So, this is where I want to come in. I want to do something. I want to be able to help people. I want to be able to at least take one huge burdeon off the shoulders of that parent who just found out that their precious, perfect and beautiful child needs help. All of you who have gone through this stage, the finding out there is a hearing loss, you get angry, you deny, you get another opinion, you get said and they you accept and grow. I want to do something that makes the financial part a little easier to cope with. That way they can put their emotions into their child and getting the child and their family through this step.
So I am thinking about this a lot more lately. This is so close to my heart. What can I do? I want to start a charity or a non-profit. This is a very rough idea right now. I have all the good intentions and heart felt desire to do this. What do you think? Does anyone have experience or input that you would like to share with me? I know that I am thinking all heart right now, and very little planning it out and what it would cost to start. I haven't gotten that far yet. But the way I figure it, who will give me their opinion better than people that may have been there themselves. People that may have felt the way I do, or people that may have been able to do something to help already. You!
So, let me know if you have anything to say about this. Opinions, suggestions, or flat out tell me I am crazy!
Sunday, October 26, 2008
Saturday, October 25, 2008
Updates
So here are a few updates on our lives...
On Monday I was laid off from my job. No big supprise there, they had me training someone else that I work with for the last month, just didn't tell me that I was training him to actually DO my job. So the job hunt begins...
Thursday I had Brianna's IEP meeting. I had to do a phone conference because since I am not working, I had to pull my kids out of daycare, and had no one to take my son for me. Anyway, it went OK I guess. I haven't gotten any paperwork yet to sign, but once I do, I will go over it all. One thing I asked for was to have an FM system included in the IEP, but they refused to. They said that they would need a "detailed" letter from her audiologist explaining why that would help her. It has to be on official letterhead. I guess I don't know what else she would write a letter on, but I am going to call her Monday and ask her to write one. The only other part that bothered me during the meeting is that the Psycologist wanted her Classified as Hearing Impared not Deaf. He read me the definition of Deaf, which roughly explained that the person does not receive benefit from amplification. He took that to mean her CI. I stated my case, that a CI does not amplify, it processes. It is a bionic device, not a hearing aid (which as we all know amplifies). I explained to him that if they classify her as hearing impared, that would imply that without the CI, she has some hearing. She does not. She is bilatterally implanted, and her residual hearing is non-existent. The rest of the board agreed with me, so she was classified as Deaf. Not that it is a big deal, but it may come up in the future. She will receive preferential seating for class, activities and testing. She will be given directions as many times as she needs them, and all oral exams will be repeated twice. She is not getting any extra time to complete a timed test, but I didn't feel she needed it. She will also be given flexible testing locations, this way if it is too noisy in the area where the test is given, she can be relocated to an area that suits her needs better. I don't think that they will have to change anything for her. She has goals, 6 of them. 4 are acidemic, 1 is to learn sing language and the last is to learn basic troubleshooting of her implant. That is mine to teach. She already knows a great deal about her implant, but until this point I have taught her teachers and the school nurse the troubleshooting (changing batteries, reading the error codes). But we will do that one just fine. So once I get the letter from the audiologist, we will have to have another meeting and put the FM system in there. I think it is silly that they need a detailed letter, they use an FM system with the other CI child in the district, and for all the HA children. But I will follow their protocol. Who knows, maybe they all had to get the letter as well. The board was quite a bit bigger than I was told. There were 8 including myself. It was great to hear all those people concerned about and caring for my Brianna. She is loved.
So for now, I am loving being home with the kids. Actually being involved in their daily lives. We used to leave at 7am and not get home until 6:30pm, so it was hard to show them lots of attention and get homework done, and dinner and cleanup. Who knows, maybe I will find a stay at home job. Do those even really exist? Ha. Well, I hope you are all doing well. I will hopefully have a bit more time to update and read all your updates. I have been lacking on my blogging for quite some time now. Enjoy your weekend!
On Monday I was laid off from my job. No big supprise there, they had me training someone else that I work with for the last month, just didn't tell me that I was training him to actually DO my job. So the job hunt begins...
Thursday I had Brianna's IEP meeting. I had to do a phone conference because since I am not working, I had to pull my kids out of daycare, and had no one to take my son for me. Anyway, it went OK I guess. I haven't gotten any paperwork yet to sign, but once I do, I will go over it all. One thing I asked for was to have an FM system included in the IEP, but they refused to. They said that they would need a "detailed" letter from her audiologist explaining why that would help her. It has to be on official letterhead. I guess I don't know what else she would write a letter on, but I am going to call her Monday and ask her to write one. The only other part that bothered me during the meeting is that the Psycologist wanted her Classified as Hearing Impared not Deaf. He read me the definition of Deaf, which roughly explained that the person does not receive benefit from amplification. He took that to mean her CI. I stated my case, that a CI does not amplify, it processes. It is a bionic device, not a hearing aid (which as we all know amplifies). I explained to him that if they classify her as hearing impared, that would imply that without the CI, she has some hearing. She does not. She is bilatterally implanted, and her residual hearing is non-existent. The rest of the board agreed with me, so she was classified as Deaf. Not that it is a big deal, but it may come up in the future. She will receive preferential seating for class, activities and testing. She will be given directions as many times as she needs them, and all oral exams will be repeated twice. She is not getting any extra time to complete a timed test, but I didn't feel she needed it. She will also be given flexible testing locations, this way if it is too noisy in the area where the test is given, she can be relocated to an area that suits her needs better. I don't think that they will have to change anything for her. She has goals, 6 of them. 4 are acidemic, 1 is to learn sing language and the last is to learn basic troubleshooting of her implant. That is mine to teach. She already knows a great deal about her implant, but until this point I have taught her teachers and the school nurse the troubleshooting (changing batteries, reading the error codes). But we will do that one just fine. So once I get the letter from the audiologist, we will have to have another meeting and put the FM system in there. I think it is silly that they need a detailed letter, they use an FM system with the other CI child in the district, and for all the HA children. But I will follow their protocol. Who knows, maybe they all had to get the letter as well. The board was quite a bit bigger than I was told. There were 8 including myself. It was great to hear all those people concerned about and caring for my Brianna. She is loved.
So for now, I am loving being home with the kids. Actually being involved in their daily lives. We used to leave at 7am and not get home until 6:30pm, so it was hard to show them lots of attention and get homework done, and dinner and cleanup. Who knows, maybe I will find a stay at home job. Do those even really exist? Ha. Well, I hope you are all doing well. I will hopefully have a bit more time to update and read all your updates. I have been lacking on my blogging for quite some time now. Enjoy your weekend!
Thursday, October 16, 2008
IEP Meeting
So Brianna's first IEP meeting is next Thursday. I hopefully can attend. It's during the day, So hopefully I can get off of work. I called Brianna's doctors and asked them to write letters for me to bring. Does anyone have any other suggestions for me? I have been reading the laws, and how to prepare, but it is all so confusing. I don't really know what I should be asking for. I guess I am a bit overwhelmed.
Ok, so the letter came yesterday, the meeting is in a week, during my normal work day, I have 1 day of vacation that I can still use for the rest of the year (I wanted to save it for the day after Christmas, but oh well). Does anyone know how long these meetings are? And most importantly, what should I expect? I mean, will this be the only meeting, or will it drag out through meeting after meeting? What do they mean by saying in the letter that it is a "mutually agreeable time"? I didn't agree to the time, wasn't even given options except to not come, do a teleconference, or postpone it.
I am really confused about what I am supposed to ask for. I mean, Brianna gets all the help that she needs (in my opinion). She sees the Hearing Itinerant every day, she has preferential seating and a very patient and caring teacher. What more could we ask for, right? Well one thing is an FM system. They gave me a hard time on that one already this year. Can I ask for that to be added to the IEP? Does it get that specific? All you moms and dads out there, all you experts...can you provide me with information I can understand? I read the laws, the meanings of the different terms that the laws use, but I am still pretty clueless as to what my role really is. There won't be any medical personnel there, so hopefully the letter from the Audi will be a good thing to bring.
Other than that, things are great. Brianna is doing so well. She is getting great grades on her spelling tests! As you can imagine, spelling tests and other oral tests were the hardest for Brianna before the implants. But now, she brings home more 90-100% tests than I could have ever hoped for. She is so much more at ease with school. She is making friends and just sociable now! What a change this year has been!
Thank you all for reading this, and please let me know if you have any suggestions for me! Enjoy your Friday!
Ok, so the letter came yesterday, the meeting is in a week, during my normal work day, I have 1 day of vacation that I can still use for the rest of the year (I wanted to save it for the day after Christmas, but oh well). Does anyone know how long these meetings are? And most importantly, what should I expect? I mean, will this be the only meeting, or will it drag out through meeting after meeting? What do they mean by saying in the letter that it is a "mutually agreeable time"? I didn't agree to the time, wasn't even given options except to not come, do a teleconference, or postpone it.
I am really confused about what I am supposed to ask for. I mean, Brianna gets all the help that she needs (in my opinion). She sees the Hearing Itinerant every day, she has preferential seating and a very patient and caring teacher. What more could we ask for, right? Well one thing is an FM system. They gave me a hard time on that one already this year. Can I ask for that to be added to the IEP? Does it get that specific? All you moms and dads out there, all you experts...can you provide me with information I can understand? I read the laws, the meanings of the different terms that the laws use, but I am still pretty clueless as to what my role really is. There won't be any medical personnel there, so hopefully the letter from the Audi will be a good thing to bring.
Other than that, things are great. Brianna is doing so well. She is getting great grades on her spelling tests! As you can imagine, spelling tests and other oral tests were the hardest for Brianna before the implants. But now, she brings home more 90-100% tests than I could have ever hoped for. She is so much more at ease with school. She is making friends and just sociable now! What a change this year has been!
Thank you all for reading this, and please let me know if you have any suggestions for me! Enjoy your Friday!
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