Decisions, Decisions, Decisions

I feel that as a hearing parent with a Deaf child we have so many choices to make that we have no idea how to make! We are constantly told do this or don't do that. Each choice that we have made has had pros and cons and people judging me for the choices that I ended up making. I try not to take it personal, but it's hard...most of the time I end up still second guessing myself and never feeling satisfied with the decision that I made.

I have seen other families go through this also. It is very disheartening and I don't feel like it is going to stop soon. I don't know if it is easier for Deaf parents of Deaf children, I guess since they have been down a path they knows what worked for them and what did not. I do not have any deafness in my family and did not know anyone who had experienced this journey.

Some of the decisions that we and/or other hearing parents have had to make...

1) CI or no CI
2) Mainstream or no mainstream
3) public school or Deaf school
4) Sign or no sign
5) SEE or ASL

Each of these decisions have serious counterparts and I often feel that hearing parents of Deaf children are not given credit for how many decisions we have to make concerning our child. I know since I have friends of other "special needs" children that their choices are more cut and dry. They make choices that are life and death a lot of times. None of the choices above are life and death for our children. Some will make life easier, but then you have to ask yourself - easier for who and why are you really making that decision?

The vision decisions that we have made with Rebecca have been much easier and much more accepted: white cane training, testing, vision training, etc. There is nothing controversial about these items - no one questions what is right for you child when they are going blind. This is what sets Deafness apart from other disabilities and why I have found the correct path for my daughter to be so difficult! When she gets out her white cane everyone knows that she can't see, when she puts on her hearing aids everyone knows that she can't hear, but when she puts on her CI it is different. All of a sudden, hearing people think that she's not Deaf anymore and some Deaf people think that she's not Deaf enough anymore! My daughter is fine with or without her CI and either way, she is still Deaf!! She is at camp for the next 2 weeks and did not take her CI with her - guess what, she's not less Deaf or more Deaf because she does or does not have it. What will happen is that people will be more accepting of her without it there. That saddens me to say, but it's true.

I have talked about how I feel about the CI several times on my blog and I am proud to say that my daughter is fine either way. She is not dependant on her CI. Some situations she prefers to hear the sounds, but is fine without it also. Her voice does not change when she has it on or off, her signing does not change - nothing about her changes!!

I wish the world was more accepting and understanding of the choices that we make for our Deaf children. It's not easy and sometimes I wish it was as easy to make those decisions as it is for my other child or for her vision impairment. I am trying to embrace the decisions that we make and accept them as the best for her, but I don't know how I will truly know what is right until she grows up and tells me for herself. Until then I pray that God will lead my every decision and that we are doing what is best for her and not for ourselves only.

When Do We Start TSD?

Okay, so I am sitting my the dorms at TSD (Texas School for the Deaf) and wondering if this school may be a good fit for Rebecca. The choices that you make as a parent of a Deaf child are so HARD! Every decision we have had to make has had positives and negatives to it. This is no different. Austin is a long way from home!! This is a 5 hour drive from our house in our small town. Rebecca is like a different person when she is around other Deaf children and she just blossoms. I know that she would enjoy the school here. There is not a doubt in my mind that this school would not be a good fit for her, but is it a good fit for our family??

Rebecca has been a school which uses SEE for 2 years, TSD uses ASL. We have always exposed her to both, but used SEE primarily since her school uses SEE. I am trying to get my SEE certification. It would also alter the life of our other daughter who will be entering 5th grade. She has never had consistancy in her life before and our home and her school have been her rock. Moving would set her back again! I bring up moving because when Rebecca comes to school here, we will move here! I do not feel comfortable not knowing her friends or just leaving her days without seeing her or knowing who she is with (I know, I am a control freak!).

We are leaning towards waiting another year, then moving the girls when they both start middle school since they would be changing schools anyway. Maybe that would be an easier transistion. I believe that regional dayschools and mainstreamed school are great for exposure to the hearing world and has taught Rebecca a lot, but a Deaf school would give her such self-esteem and she could participate in so many activities. At her school, there are no Deaf teachers, no Deaf adults working there at all! Here, Deafness is all around you. She would have wonderful role models and feel confident that she could grow up and do whatever she wants! The Texas School for the Blind also works closely with TSD and she would receive great care from them as well as her vision declines.

So, my dilema is not whether or not to send Rebecca to TSD, it has become WHEN do I send Rebecca to TSD?? She has already stated that she wants to start here next year. I am not sure that is the best solution for the whole family. I think one more year will not harm Rebecca and we can gather our finances and prepare for the move to Austin next year. Anyone else gone through this??

Summer Has Arrived!!

Well, summer is finally here and the plans are coming alive with summer activities for our family. We will be in Austin most of June, then it is off to Oklahoma to grandmas. We are also going to Arkansas to look for diamonds and to San Antonio to get wet at Sea World. We also have camps intertwined with all of that!!

This is our 4th summer with kids in our home. One thing that I have learned is to keep the kiddos busy and looking forward to something. We have everything spaced out so that something happens every 2 to 3 weeks! We will also do things around here like Six Flags, nature museums, zoo, movies, etc.

Next Wednesday is our appointment at the Retina Foundation and Tuesday we have a representive coming from DARS to help us teach Rebecca how to do her chores more effectively. She will be visiting periodically thoughout the summer.

Both girls will be in 5th grade next year! It is almost impossible to believe, only one more year until Jr. High! Scary!!

Rebecca almost passed her TAKS test (standardized testing in Texas) and is only short a little bit in her reading. So, in our spare time (yeah, right), we will be working on reading with her to help her be able to ace it next year.

Jasmine had no meltdowns at the end of the year which was a great thing! She handled her end of year anxieties much better this year.

Time to Play Catch Up

I haven't been on here for a while and several things happened while I was away...

I went to this awesome event organized by our region. They took the kids and did role playing with them and taught them a play while the parents cooked with blinded goggles. I chose the pair of goggles that were most like what Rebecca's sight will be in the future. Her VI was there at the event so he helped me choose the right one. It was really difficult to see, I had one pinhole where I could see clearly if I squinted really hard. I had some light from the bottom but not a lot of clear vision from it. My left eye was completely covered.

We made pudding first. Sounds easy, right? WRONG. I had to measure milk, put the powder in the bowl and then mix it. I figured out how to use my hands to measure the milk and found where the bowl was, the hardest part was knowing when it was all mixed. I am so used to using my eyes to know that it is complete so I probably over-mixed it. Next we crushed OREOs. I didn't even use my eyes for this. They were worn out from the pudding, so I closed my eyes and felt my way through the OREO portion. Next we added gummy worms to our cups of pudding and OREOs. The organizers really helped us with this. After we added the worms and the crushed OREOs, we were told to add a spoon. This really helped me be able to feel around to know which cups still needed worms and OREOs.

It was a great eye-opening experience for me to experience just a moment of what my daughters life will be like. Two wonderful women came and talked with us about their experiences as blind women and we were able to ask questions about what their parents did that helped them and which things hindered them in their lives. We then ate lunch together with our children, enjoyed the desserts that we made and then the children performed for us (goggles were off by then).

We have also went to the Retinal Foundation Of The Southwest recently to check Rebecca's eyesight against what it was 4 years ago. We had a great interpreter at the appointment that actually grew up with a family that had 3 children with Usher Syndrome. I love how God places the right people in our lives! They did hours of testing and it was very difficult for Rebecca but I also believe it was very important for us to know the results. The nurse has called us and said that they found an extra mutation in Rebecca's Usher Syndrome called CI mutation. They would like to talk with us about doing a clinical trial. They explained to me that this is very rare and want us to come back this week to give blood and discuss it further with us.

Rebecca is making amazing progress in her language skills and will be going to the Texas School for the Deaf this summer for 3 weeks! We will be staying with her for 3 days and then she will be there for the rest of the time without us. This will be very hard for our family to leave her there but summers are terribly difficult for her since we do not have a lot of Deaf children in our city.

I am also studying to get my interpreters certification so that I can work as an interpreter at Rebecca's school. This would allow me to be home more for my children and have off Christmas, Spring, Fall & Summer breaks. Please pray for me as I study. I have only been signing for a year and a half, but everyone keeps telling me that I am ready. I wish I was as sure of it as they are.

Summer Is Approaching

I am starting to feel nervous about summer already! Maybe it's the Spring air or knowing that we are in the last 9 weeks of school, I don't know but I definitely feel the crunch. My husband and I both work so we pay for the children to go to summer camps either locally or other places. Most of the summer is spent in our local summer camp. Two years ago my husband was laid off right before Rebecca came which was a blessing in disguise because we did not have to pay for summer care and my children had more time to bond with each other and my husband. Last year, we sent them to the after school care summer camp which had a lady there that signed! OH - WHAT A BLESSING! Rebecca enjoyed her time there and it fine. She really missed the children and interaction with others besides her teacher who was also watching 19 other children.

This year, that wonderful lady who signed is going to school to become a teacher and is not sure if she will do the camp again :( We have signed Rebecca up for TSD (Texas School For The Deaf In Austin) camp for 2 weeks hoping that will give her some of that much needed communication with other children and introduce her to the TSD campus. That leaves about 2.5 months left to plan. We are trying to find other day camps that are local and have someone who signs, but it is very frustrating and difficult.

Jasmine has started Karate and is loving it!! We are trying to find another activity for Kimberly, but again it is not an easy task. I would like for her to take art classes, she is very artistic and I think that would be wonderful for her. Pray that we can find a class to fit our schedule and our budget for her.

New Independence

I know it's a little early for independence day, but not in our house. Rebecca got her white cane!! We are also so excited that it hard to explain. Rebecca has so many things that she has had to be dependent on us for. I interpret for her often, we help her follow conversations, we explain things to her and her vision has only been something else that she had to depend on us for. When we went into a room that changed lighting or stepped outside, she grabbed on and depended on us to lead her away from danger. When there was obstacles in the room or speed bumps in the parking lot, she depended on us to make sure she did not trip. NOW - ALL THAT HAS CHANGED WITH ONE LITTLE CANE!!

Rebecca continues to amaze me with the cane and I have to remember that she can do it herself. Tomorrow will be one week since she got to bring the cane home. Since then she has went down stairs by herself, walked across parking lot and over speed bumps, went from light to dark, walked out to the car by herself to get her backpack out of the car at night. She has not grabbed for my arm or ran over anything all week! She even had a sleepover at the Fort Worth Zoo!! Her bruises are healing and for the first time since I have known her she is become bruise free!

Her having her cane has given her an unbelievable independence as well as a new confidence, but it has also given the other members of our family a chance to educate tons of people so far and has taken tons of stress off of us. We are not worried about Rebecca falling or hurting herself. We are not constantly looking for what is ahead of her - she will find it!

We are also following American Idol and Scott McIntyre experience. This has helped Rebecca to see that being blind does not stop you from following your dreams. Big thanks to Scott McIntyre and his bravery for being on that show and a great role model for my child and for so many others.

Tonight we decorated some of her white cane for St. Patrick's Day. It would not be Rebecca's if we didn't girl-ify it a little bit.

Update

I think I may have spoke too soon on my last post, which has been over a month ago (how did that happen??!!). My husband went into the hospital where we stayed for 4 days. We had to juggle the kids from house to house which I am grateful that I had so much support. My car died, still undiagnosed but it will not hold oil - tried all of the cheaper fixes, unfortuately it is not any of those. We have a 1992 Ford pickup which we have also been blessed with that we are using in the meantime. Then, my husband was told that January 31st would be his last day of work. We started preparing to go through being unemployed again and then on the 30th one of the men that Joe worked with was deported back to Guatamala. Talk about an answered prayer!! So, my husband still has his job. Then Wednesday, my mother-in-law passed away out of town. We have been dealing with funeral arrangements, etc. She had no provisions for herself and we have not seen her in over 10 years.

Anyway, just wanted to catch everyone up and let you know I am still alive. I have also found Facebook which is my new passion. How did I communicate prior to this wonderful website? I have found so many old friends and many new ones.