It’s been an amazing weekend so far, and it’s only Friday. Yesterday, I joined the CSDVRS team at our booth at the Association of Late-Deafened Adults Conference. I attended the first ALDA conference twenty years ago, just a few years after I became deaf, so it has been fun to reconnect with some of the faces that I saw long ago.
At the CSDVRS booth, we are showcasing the two new videophones: Z150 and Z340. Both of the videophones can be used with Voice Carry Over. This allows a person to use their own voice to talk to the person they are conversing with, and at the same time, have an interpreter on the videophone translating what is said. The user can choose between American Sign Language, English-based Sign Language, or lipreading.
There were several people who tried VCO on the CSDVRS videophones for the first time and were simply stunned at the ease of using the phone. There were others who called their friends directly and chatted face to face. That’s what I love about my work with videophones– just seeing a face light up when they connect with someone in a way that they’ve never done before–priceless.
At the Sparkplugging/One2OneNetwork event last week, one of the items in the swag bag was a gift certificate for iTunes. I was really excited to see this, because I was getting a little tired of the same old music playing over and over. It was time for some fresh music, but I had no clue where to start. I’ve spent money on CDs before only to find that I only liked one song on an entire CD.
I started wondering how I could get some new love songs to try out. Then it hit me:
I was tired of hearing my son’s rock and rap music blasting in the house, so I knew I wanted to go for something mellow and meaningful. So I put out this tweet:
And guess what? I have a whole bunch of love songs to try out before I buy them on iTunes:
Only one song was repeated twice as a favorite, Elton John’sYour Song. I also received several via direct message, but since they came in privately, I’m guessing they didn’t want their choices to be shared. I’m so excited that I have a list of songs to pull up lyrics to and to start learning some new music.
Thanks, Twitterville!
My favorite love song is Just the Way You Are by Billy Joel. This was the song played at our wedding.
Last night, I attended a fundraiser for Equip for Equality, a non-profit organization that provides legal assistance for people with disabilities. I attended as the guest of Patrick Hughes, owner of Inclusion Solutions who co-chaired the fundraiser. You may remember Patrick from this interview over at Diversity, Inc.: Patrick Hughes, President of Inclusion Solutions.
Before I met Patrick, I knew about Equip for Equality from my friend, Howard Rosenblum, a deaf attorney who has been with the organization since 2001. When Steak ‘n Shake denied me service in the drive-thru back in January, I asked Howard to work with me to try and change the way deaf and hard of hearing people are served in the drive-thru. We’re still working together to make changes in the drive-thrus at Steak ‘n Shake.
There’s another reason I attended the Equip for Equality fundraiser. Several years ago, when I first started up Illinois Hands & Voices, I received information about a family from Naperville who was struggling to obtain appropriate support services for their son. I met with the Abou Ezzi family and met their son Tony, who is hard of hearing. Tony was attending a local high school and had a difficult time accessing all of the communication that was going on in the classroom. Believe it or not, one of the accommodations suggested by the school was a swivel chair, so that Tony could swivel around and read his classmates lips.
I met with the family and suggested using CART (Communication Access Realtime Translation). Tony was a bit hesitant to try it. “Can you just try it for two weeks and if you don’t like it, we won’t bring it up again,” I asked him. He agreed.
I joined the family at the IEP meeting and after a lengthy discussion, the school agreed to try CART in the classroom. The very first day, Tony came home and told his mom that he had no idea he was missing so much discussion going on around him in the classes. Tony continuted to utilize CART services throughout high school and graduated with honors.
Tony became a huge advocate of CART, but found himself encountering resistance from the college he choose to attend after high school. That’s where Equip for Equality came in; they stepped up to bat and helped to make CART a reality for Tony’s college classes. Tony is now about to graduate and plans to attend law school to become an attorney.
On Wednesday, I met with Donna Cutting, author of The Celebrity Experience: Insider Secrets to Delivering Red Carpet Customer Service at Maggianos, one of my favorite restaurants. It was the first time for Donna to dine at Maggianos and I think I successfully converted her into a Maggianos junkie. We talked about everything under the sun, from writing to traveling to bucket lists. It was a very enjoyable lunch!
Last night, I headed out to Lake Shore Drive for the Girls Night Out event sponsored by Wendy Piersall from Sparkplugging; Epson and One2One Network. I wasn’t sure if an interpreter was going to show up as the agency never received my email request and then struggled at the last minute to try and find someone. As it turned out, there was no interpreter, but I managed to make it through the evening firing up the lipreading skills. Everyone was friendly and most were easy to understand. Liz Strauss and I had a moment where I couldn’t lipread a thing she said and she resorted to some creative fingerspelling to help me out. I chatted with Barbara Rozgonyi and convinced Deb DiSandro of the benefits of Twitter. As I moved around the room, I discovered that several of the writers from the Chicago Moms Blog and Fifty-Something Moms Blog were scattered here and there. We all gathered together for a picture:
It was a nice evening connecting to all these cool gals and being able to talk about blogging and the business of writing. I left with some great swag–now I no longer envy those who went to BlogHer.
(left to right: Wendy Piersall, Liz Strauss, Moi, Barbara Rozgonyi)
Last, but not least, today’s a special day. My middle kiddo is now a bona-fide, certified teenager. Happy Birthday, Lauren!
With three kids on Individual Education Plans (IEPs), we’ve killed a couple of trees throughout the years with the paperwork that gets generated by the schools when developing each kid’s IEP plan. Once a year (and sometimes more if we have something to change), I meet with each child’s team to go over the goals and communication access plans.
I learned right away that having a perfect IEP is a myth– there will always be things that go awry or teachers who are unaware of what’s on the IEP. Janet DesGeorges and I teamed up and wrote The Myth of the Perfect IEP: After the Paperwork is Finished.” One of the most crucial pieces of advice in that article is to find someone who can act as the MVP of your team:
Among the team that is assembled to deliver the services and supports for your child throughout the year, there is often an MVP -that professional who goes the extra mile, who supports you when you are advocating for your child, who you tend to call on when there is a problem. Whether that person is your child’s general ed. Teacher, sign language interpreter, Teacher of the deaf/hh or a speech language pathologist, you can create and sustain a positive relationship throughout the year by communicating regularly, contacting them when there are things to be celebrated, and not just complaints to be delivered etc. and to be able to create strategies for effective communication access.
If you can’t think of one person on your child’s IEP that you would consider an MVP, start thinking about who you could begin a positive relationship with in order to be able to collaborate with throughout the year, and be able to call upon for help when something falls through the cracks.
When my oldest son first attended the school down the street from us, I made it a point to go and meet the principal and tell her about David. She became an ally and an important part of the team. I also volunteered in the school for parties and at the library, getting to know the staff and the teachers. I spoke with each kid’s class during the early days, reading books and introducing signs.
When I work with families, I tell the parents that they are the case managers for their kids. The idea of parents acting as case managers on the IEP team may strike some parents as strange, because aren’t schools supposed to be doing that job? But here’s something to think about– the parents, are the ones living daily with their child from the time they enter the family to the rest of their life. The parents are the one steady part of the IEP team that is always there.
Another neat tip that I learned from a parent long ago, is to put together a binder to keep all of your information together. Unfortunately, I was never organized enough to accomplish that. Some of the parents I’ve worked with have created booklets to give to each team member when transitioning from early intervention into a school. In the booklets, they include pictures of their child at home and at play with a paragraph or two (sometimes more) describing their child, including helpful tidbits about communication or assistive equipment.
You may find yourself in challenging situations where the IEP team does not agree or you may be presented with questions or statements that are difficult to answer. Hands & Voices created questions with answers that parents can use at an IEP meeting: Pop-Up IEP. You’ll also find the IEP Checklist helpful for figuring out what your deaf/hard of hearing child might need in their IEP.
If you have IEP tips, lessons or experiences to share, I would love to hear them in the comments below. Have you had an IEP situation that was challenging or that went well–share it with us!
The day is here: Blog Action Day. Today, over 10,000 blogs will spotlight the issue of poverty and raise funds to make a difference. Kudos to Easton Ellsworth and the team behind Blog Action Day.
I thought long and hard about what I wanted to blog about today. My kids are deaf and hard of hearing and they attend school in a district that is well paid for by taxes. They are receiving an education that is lacking very little in terms of resources and access to projects. They have access to digital hearing aids, interpreters, FM systems and itinerant teachers.
A couple of years ago, I attended a conference where I met an educator for the deaf from New Mexico. He described an educational system that was quite different from what my children are receiving. Many of the families with deaf and hard of hearing children were scattered in very rural areas. Many were living in what we would call deep poverty in the United States. Some of the families came across the border. He talked about how families had very limited access to the many choices that families in bigger cities take for granted.
Mrs. V's classroom
I tried to think of a way that I could ask my readers to help make a difference, a tangible difference for deaf and hard of hearing children–today. I have a project that I’m supporting over at the Chicago Moms Blog which is part of the DonorsChoose.org Bloggers Challenge. It is a fundraiser for a classroom in New Mexico for deaf and hard of hearing children in an area of high poverty: Bugs, Crystals and More for Hands On Scientists. Just $546 dollars will fund this project and make a difference in the lives of several deaf and hard of hearing students (and the future students to follow). The project has raised $125 dollars so far and the deadline to fund this project is November 21st. Perhaps my readers, today, can help this project reach its goal.
It only takes a minute to make a contribution, and make a difference. The learning that these students will reap from this project will help shape future minds.
Won’t you make a difference today?
Update as of October 15th in the afternoon:
I’m sitting here amazed, totally amazed. This project is now fully funded. A special thanks goes to all the donors: Karon, Davis, Jessica, Deborah, Joanna and Eileen. Joanna and Eileen gave today and helped to fully fund the project.
You all are amazing!
Update: Thank you from Mrs. Vogt:
Dear Karen,
Thank you so much for your donation towards hands-on science materials for our classroom with deaf and hard of hearing students. We are so excited to start using the supplies to do science experiments. We have seen some different science supplies in books and I am thrilled that the students will now get to explore magnifying glasses, lenses, microscopes, and color paddles for themselves! I have been reading lots of books and websites to find experiments that are good for kindergarten and first grade kids. Now, we will be able to do the experiments. By the way, I showed the kids pictures of the supplies we are getting, and they said to tell you that they are the most excited about the growing crystals kit! Thanks again so much!!
Now see, I could have stressed myself out and agonized over what picture to put up there, but what’d I do to eliminate the stress of finding one? Why, I lifted Robert’s cute little stress picture right off his site! Of course, that would be called, ahem, borrowing, wouldn’t it?
It seems like everywhere we turn nowadays, the topic of stress pops up left and right. “Ten Steps to Eliminate Stress from your Life!” screams one magazine. “Live a Stress-Free Life,” urges another. It’s no wonder that so many magazines are tackling the topic of stress: with the stock market in the pits, food and health care soaring, and the housing market basically flat–these are stressful times, indeed.
Over the weekend, I had the opportunity to experience a relatively stress-free weekend. I got in the car and drove up to my parents’ house for the weekend. I left behind the hubby and children (they were completely ok with that!) and it was my first time up at Christie Lake without them. I was able to blast my John Denver/Kenny Rogers/Lonestar music without anyone imploring me to turn it down, or worse, to turn it off.
Let me give you a glimpse of why it is so peaceful up at Christie Lake. This is the view from my parents’ kitchen window:
Peaceful, indeed.
I spent the weekend painting the decks with my Dad and sis. I had planned to winterize the jet ski and put it away for the winter after we finished up with the painting. During all of Saturday morning, I was enjoying the sun and the paining was moving along. The weather was incredible. On Saturday afternoon, I started to feel some stress. My neck was aching and my jaw was tensing up. I was trying to figure out what was causing it and then I realized what it was: I didn’t know how to winterize the jet ski and I was running out of time to figure it out. I had read the owner’s manual over and over earlier in the week, but it might as well have been written in Greek. Here’s an example of part of the winterizing process:
Prior to inserting the ignition coil to its location, apply some Molykote 111 grease (P/N413 707 000) around the seal area that touches the spark plug hole. After installation, ensure the seals seats properly with the engine top surface.
Ignition coil? Seals? And where the heck were the spark plugs located? No wonder I could feel the stress mounting that afternoon. I had texted Leaders Marine the day before and asked if I could stop in so they could walk me through the process. Sure, they said.
I borrowed my Dad’s truck and hooked up the jet ski and drove to the marine shop. My Mom came with. Along the way, we talked about a bunch of things and ironically, the subject of stress came up.
“Remember that piece of advice you gave me a long time ago,” I asked my Mom. “You told me that you used to worry and be stressed out and then you realized you were wasting a lot of time worrying.”
And then Mom finished the thought. “Yes, everything always has a way of working out, it just always does. So why get all worked up about it. I look back at all the years that I was stressed out about something or other. I didn’t have to worry so much.”
Well, Mom’s advice has stuck with me through the years and when I find myself stressed out, I have to ask myself– what is the solution? What is the worse possible thing that could happen? What can I change right now to ease the way I feel?
So much for being stressed out about the winterizing process. The mechanic from the marine shop walked me through the steps a few times until I felt confident that I could do it. Dad helped me finish the process and we put the jet ski back in the shed and put all the neighbor’s boats back in.
“I just hope I did this right,” I said to my Dad.
“Well, no use worrying about it,” he said. “We’ll find out in the spring.”
I love what I’m seeing on the web today– people working together–raising awareness, funding non-profit organizations and supporting causes. Today, I want to share a few things that are important to me and I hope you’ll take a moment to get involved as well.
I’ve long been involved with supporting Hands & Voices and you may have seen the link on my blog, Donate to Hands & Voices. We don’t actively ask for donations, but our project is there for anyone who wants to support families with deaf and hard of hearing children. After four years of being involved with this non-profit organization, I can see how hard our leaders are working at the helm to make changes for deaf and hard of hearing kids today.
Over at Chicago Moms Blog, we are participating in theBloggers Challenge to raise fundsfor various school projects. There are several projects there that involve funds for deaf and hard of hearing kids. Several teachers that I know have shared with me that they often dip into their own pockets to fund their classrooms and to expand opportunities for deaf and hard of hearing kids to learn more. Check out the projects: Chicago Moms Blog Bloggers Challenge.
The issue of poverty is something that we in America often do not come to experience, for even the most poor often have their immediate needs taken care of if they choose to participate in government programs. I live in an area where poverty cannot possibly compare to poverty in areas around the world. Even the homeless man who lives in a nearby town has full internet access in his parking garage home.
So join me and thousands of other bloggers on Blog Action Day on October 15, and together, let’s make a difference.
I love Twitter. Over on Twitter, I’ve been able to network and connect with a variety of people that I probably wouldn’t have gotten to know through normal networking channels. I consider Twitter to be my virtual watercooler– I go over there to hang out during my breaks and I get to join in numerous conversations at once. In real life, I can’t duplicate that without an interpreter in front of me.
I met Barbara Desmarais on Twitter–at least I think I did. With so much online networking, it’s hard to remember how some of the Twitter relationships originate. She’s CoachBarb over there, and we struck up a few deaf-and-parenting-related conversations. I learned that she teaches sign classes for babies and she raised twins who are deaf. She is a professional Parent Coach and helps parents tackle their parenting challenges. Since I’m always curious about parents of deaf and hard of hearing children and their stories, I asked Barb if she would be willing to share her experience in a guest post.
“I’d be honored,” she said. So without further ado, here’s Barb’s story:
In June of 1984 I attended a party where there were deaf people of all ages and people who worked with Deaf/deaf and hard of hearing people. I had been working with deaf and hard-of-hearing people in a variety of capacities for about eight years. At the party, I met Serge and his five-year-old Deaf, twin sons Adrian and Roger.
Serge and I began dating about two weeks later and married the following April. A few months before marrying, I moved in with the three of them to become step-mom to Adrian and Roger. They visited their own mother every other weekend and twice a week for dinner. I didn’t have my own children at
the time and Serge and I made a decision that I would work part-time to be available for the boys when they came home from school on the days they didn’t go with their mother.
That year, Adrian and Roger began attending Jericho Hill School for the Deaf here in Vancouver, British Columbia, which was a one hour bus commute from our home. They had been attending a pre-school for the deaf for three years. Sadly, Jericho closed at the end of their eighth year so they were moved to a new school where they were mainstreamed.
Before meeting Serge, American Sign Language was already a big part of my life as I’d worked with deaf children for a number of years and had deaf friends. Adrian and Roger communicated solely through ASL. It would have made things very difficult for me had I not known their language. They are both profoundly deaf and lip read very little. My formal background is in Early Childhood Education so my experience with children gave me a bit of an edge as well, although I quickly learned that being with children almost full time was very different than being with them in a classroom.
From the beginning, Serge and I shared a very similar approach to raising children with a disability. We did not want to pity them or assume their disability would severely limit them. We disciplined them the same way we disciplined the children we had later on. We both looked at them as being the same as any other children except they used a different language. Serge had immersed himself into the deaf community and learned ASL. He could easily converse with the boys. We always made a point to include them in conversations and fill them in on interesting things we heard on the radio or in the community. I used to read to them a lot at bedtime.
We lived in a townhouse complex where there were lots of young children. Adrian and Roger played with other children in the neighborhood although they usually preferred to play with each other. They were each other’s best friend. We made an effort to organize play dates with other deaf children
from their school though so they had plenty of opportunity to interact freely with children of their own age.
In June, 1987 Adrian and Roger’s sister Claire was born. They were ecstatic to have a new sibling. She picked up signs right away and could communicate her needs long before she could talk. Two years later their brother Marc came along so we were now a family of 6. By then the boys were well
entrenched in their school and had many close relationships with other deaf children. Claire and Marc got very used to having deaf people around a lot as well. In the early years we had deaf babysitters for all 4 of them.
Adrian and Roger are now 29 years old and leading full, rich lives. They both have stimulating and rewarding careers and active social lives. I’m grateful I had the experience of raising them as I know it has made me a better person.
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We talked about everything under the sun, from writing to traveling to bucket lists. It was a very enjoyable lunch!
