Saturday, February 16

Proud Of Our Possibilities

This week I got a good dose of the deaf/blind world...let me explain...

Tuesday, we went to sign classes. Wednesday we went to the audiologist, got Rebecca fitted for molds, tested again with her implant and tried to get the FM system to work with her CI for school. Friday we got the FM system working at her school (woo-hoo!) and I had a meeting with DARS to discuss vision services for Rebecca.

I had no idea what was available for the blind in Texas! Wow! I'm impressed! I also learned the Rebecca is legally blind right now & what that means. I thought that blind meant that you couldn't see - it's not! Rebecca is going to be evaluated and then will start white cane training. For right now we are telling Rebecca this will help her in the dark. She does not understand blind and we are afraid if she did understand it would scare her. So, we all agreed that the best way to tell her was "this is going to help you in the dark". Her light times will eventually become dark times and she will know how to get around in the dark. That is the goal.

We had this conversation with her to make sure that she understands and she is excited about getting the cane. We used a little horse on a stick to give her a visual cue as to what it is going to be & she now wants to walk around with the horse. So, I think she will be fine and take to the cane very well.

They did not think that teaching her braille right now was a good idea because she does not need it right now & she may not need it for a very long time. They said that even if she learned it right now she probably would not retain it & would have to learn it all over again later. Rebecca is learning so much right now that we also agreed that it would just end up being something else on her plate (and it's not critical right now).

The school is trying different colored laminates with her to see if that makes a difference with her, but so far it hasn't changed anything.

Texas has camps, sports leagues, career readiness type activities, ropes courses, family fun nights, mentoring, confidence building activities and O & M (obviously). They are also going to send someone to our home to evaluate how things could be arranged differently here to help Rebecca further. They will also work with my family on how to properly lead Rebecca when she does need it. They will help us with technology devices that we could have around also. I am so excited about all these opportunities for her!

We are still working on finding classes on tactile signing so that we can start using it some with Rebecca. So far, we've gotten nothing close to us for this but will keep looking & now I have DARS helping me look also.

They gave us this form that asks questions that were very telling of Rebecca's sight and really made me think about it.

Is she afraid of the dark or shadows? YES
Does she have difficulty seeing stars at night? NO
Do bright lights hurt her? YES
Does she have difficulty finding small objects that have been dropped? YES
Does she ignore/fail to see other standing/signing by her side? YES
Does she have a hard time seeing sign language in dim light? YES
Does she shuffle her feet? SOMETIMES
Does she bump into things? YES
Does she stumble on stairs or curbs or have problems on bumpy ground? YES
Does she walk with her feet wider apart than most children? YES, especially running

I had a bunch of other questions too, but I thought those were interesting and telling of where she is visually.

I went to the meeting on Friday very worried about the blindness part of Ushers and left feeling a lot better about it. There's a lot of services and ways to help Rebecca and I feel like we can tackle this as a team. I'm so glad that I went and I'm ready for the next step.

I am also proud of people within the deaf blind community that I have only seen through the internet. I'm proud of how they are working on getting things changed and the perceptions changed in the deaf community. I have seen peoples faces and them back off when I say that Rebecca has Ushers Syndrome. It's sad & it needs to change. Deafblind is not a death sentence & it can be worked with if you will just take the extra time. These people are extraordinary & I'm proud that Rebecca will be in this community. I'm hoping that by then Deaf and Deafblind will be considered one community and are not seperated and she will not be segragated by the Deaf community. Most deafblind people are Deaf first culturally & that is why it is not called blinddeaf, but deafblind! Please make small changes to accomodate so that you can get to know these beautiful people - they have a lot to say, please let them speak their minds and have the open mind to listen.

6 comments:

Dianrez said...

It is truly exciting to meet people in the Deaf-Blind community and realize that there is so much there to offer. The people are great! The variations in degrees of deafness and blindness is also wide and the adaptations too many to count with technology in the future offering even more.

The Deaf community is also good about supporting friends and spouses that have declining vision as they go through life together, so it is important to Rebecca to have Deaf friends as well as others during her growing up years.

Anonymous said...

You are an amazing mother!

Ashley's Mom said...

Being deafblind hasn't slowed my Ashley down at all. In fact, I don't think she thinks she is any different than anyone else. One of these days I may get the courage to tell her she is disabled ;)

laura said...

I suggested you that contact with Helen Keller National Center of Adults and Youth DeafBlind - in Sands Point NY - www.hknc.com or org. that they will provide training for braille and tactile ASL for all Usher Syndrome people. I also suggested you to contact with American Assoication of the DeafBlind in Maryland -www.aadb.org or com. Well, My hubby have Usher Syndrome I.

Anonymous said...

Ditto what Laura said. HKNC and AADB should be great resources for you and your family. I am always humbled by your blogs and amazed you make the time to share your journey with us. Thank you.

Mother of Bilingual Deaf and Hearing Children

Cynthia said...

I am so excited to read all you learned Friday! When we started the vision loss it was so scary, and still is at times, but once I began learning all there is to help the kids it made a big difference in overcoming my fears.

Texas does offer so much for the kids. I have often thought of moving there for that reason.

Thanks for the link to the video with tactile sign. It so warmed my heart to hear them talk. Although we're not yet near the need for tactile sign, I am looking for someone or somehow of learning it also.

cynthia