Ageless Passions by Karen Putz

Author: Karen Putz

  • Working with Your IEP Team

    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.  

    There are two books that I regularly recommend to parents:
    Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide

    The Complete IEP Guide: How to Advocate for Your Special Ed Child

    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!

  • Dr. Carolyn Stern, Family Practice Physician

    I can clearly remember the first time I met Dr. Carolyn Stern– I was filled with a million questions.  “How do you listen through the stethoscope?” was one of the questions that I asked. 

    “I have an amplified stethoscope,” she explained.  “I can also sometimes feel for blood pressure.”

    Dr. Stern was the first doctor that I had ever met who was deaf.  After chatting with her, I learned that there were many more deaf and hard of hearing individuals in the medical field.  At one time, I wanted to go into nursing, but I was pretty discouraged by a well-meaning counselor who pointed out all the difficulties I would encounter in the medical field because I was deaf.  This is why I feel it is so important to show deaf and hard of hearing youth today that they can indeed, do many things in many fields.

    Today, Dr. Stern is the Medical Director at the Rochester School for the Deaf and she works in Urgent Care at St. Mary’s Walk-In Care Center.  Dr. Stern is also the creator and founder of DeafDoc.org, a website that covers many different health care issues presented in American Sign Language and captions.  I love the quote on her site: “The difficult is easy, the impossible just takes a little longer!”

    To learn more about Dr. Stern: The Deaf Doc is In!

  • Blog Action Day–Taking Action to Make a Difference

    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!!

     

    Other bloggers who are making a difference:

    Five Minutes for Mom:  Blog Action Day: Poverty

    ProBlogger: Reflections on Poverty

    Remarkable Parents: The Scoop on Blog Action Day

    The Broad Brush: Poverty

    Karen Swim: Blog Action Day: Poverty

    Middle Zone Musings: It’s Time

    Joyful Jubilant Learning:  How Much Can We Learn in a Day?

    Liz Strauss:  Personal Environmental Action

    Joanna Young:  Words That Make a Difference

    CopyBlogger: Why Jesse Won’t Go to College

    Meryl.net: Blog Action Day: Poverty

    If the World Had Wheels:  Disability and Poverty

    Face Me, I Read Lips: Blog Action Day: Help Those Who Need Hearing Aids

    Amy Derby: Look, See, Do Something

  • What I Learned from Stress

    Over at Robert Hruzek’s place, Middle Zone Musings, the topic of today’s groupwrite project is:

    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.”

  • The Importance of Fundraising And Getting Involved

    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 the Bloggers Challenge to raise funds for 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.

    We have another big opportunity coming up to make a difference:  Blog Action Day 2008–Poverty.  I learned about this from Easton Ellsworth, whom I met at the SOBCon ’08.  Take a moment to take a look (it is captioned):

    Blog Action Day 2008 Poverty from Blog Action Day on Vimeo.

    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.

  • Stepmom Shares Life with Deaf Twins

    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.

    Barb's Children

  • Are You Comfortable Being Deaf/Hard of Hearing?

    “My son has some issues with being hard of hearing,” a mom recently shared with me. I glanced at her son. He seemed ill at ease.

    I nodded.

    And I understood.

    Because you see, I was in that kid’s shoes many years ago. I grew up hard of hearing and when I received a hearing aid at the age of nine, I rebelled. I didn’t want anything to do with it. Frankly, I didn’t need it. I was fine, thankyouverymuch.

    I wore it during school hours, partly because I was told that I had to and partly because it made things louder, not necessarily clearer–but louder. I was embarassed about that hearing aid. I hated it. I hid it. That piece of plastic reminded me that I was different from my peers. That I stood out. So I did my best to blend in. I wore my hair down. I smiled and nodded and laughed along with jokes and conversations that I either caught snippets of or had no clue at all what was being said. When confronted with the idea that I was hard of hearing, I responded with, “Oh, sometimes I can’t hear what you say.” Never mind that I was lipreading to comprehend conversation, as I had little ability to understand words via auditory means alone.

    So I understood where that mom was coming from, and I understood that feeling of being uncomfortable. I wrote about Embracing the Identity of Being Deaf or Hard of Hearing previously. Ironically, just this weekend, I came across two articles that talk about learning to accept being hard of hearing:

    From Mail Online/Disability Alert, Liz Jones shares her experience of finally labeling her hearing loss and coming to terms with it:

    I received some bad news two weeks ago. After years of refusing to accept I had a problem with my hearing, I finally decided to go to a clinic and find out the worst, which is that I have, at best, 30 per cent hearing in each ear.

    It was weird, hearing (if that’s the right word) that I am officially disabled or impaired.

    But I suppose I can at last tell people I am hard of hearing – which hopefully they will understand and make allowances for – rather than doing what I have been doing up until now, which is to try to appear normal.

    This has only made people – friends, colleagues on the phone, shop assistants and so on – think I am merely mad, rude or eccentric.

    I first noticed I had a problem at school. I could barely follow what the teachers were saying, although they never seemed to notice.

    I avoided parties and school discos because I could never join in the conversation. I would just stand there looking awkward.

    Over at the Dallas News, Jeanna Mead shares her experience of “coming out of the closet” about being hard of hearing:

    This is a hard column to write – I have to let go of years, decades, of hiding my hearing loss, and now I am about to “come out of the closet,” so to speak. I am hearing-impaired, practically deaf – but that is only part of the story.

    That is not who I am; I define myself by so many other things, and way, way, way down on the bottom of the list is “hearing impaired.”

    I lost my hearing when I was 4, which explains why my speech is so good, but I have to give credit where credit is due; my Mema worked tirelessly to coach me to speak correctly, holding my hand to her throat while repeating words over and over until I could say them the right way.

    It wasn’t until I was an adult that I realized there were hearing people in this world who could not pronounce Mexia, Rowlett, Louisiana, Tawakoni or even “congratulations.”

    Getting comfortable being deaf and hard of hearing is often a journey and over at Tania Says, Tania Karas shares a life-changing day that occured when she stepped into a deaf classroom for the first time:

    Hale has a pretty big deaf program, spanning from preschool until 8th grade. The students have a wide range of hearing loss. All use sign, but all use their voices as well. The classrooms are unbelievably deaf-friendly; there is one teacher for every 3-4 students, a combination of sign and speech, resource and speech pathology teachers, and a whole bunch of kids who just understood each other. I had never seen a deaf classroom before, so this was all like a dream world to me. Communication just flowed so seamlessly, much unlike the constant confusion I have encountered all my life in mainstream/”hearing” classrooms.

    But what got me the most was that these kids were happy. They had crazy-colored ear molds and bright cochlear implants on display for the whole world to see. The philosophy behind the instruction at Hale was to take pride in one’s deafness. The students’ hearing loss was just a small part of their vibrant personalities – when I saw them in class, I didn’t think “deaf kids,” I thought “happy kids.” And I kinda wanted to be like them.

    And that’s what I wish for every deaf and hard of hearing child or adult– to become so comfortable with being deaf or hard of hearing that you’re happy as well.

  • Moving in a New Direction With CSDVRS

    Today, I’m heading over to Harper College for the Deaf Nation Expo.  I’ll be at the CSDVRS booth, where we have an exciting line of new “Z” videophone products and services.

    You may recall that I worked previously for Hands On and for i711.com before they merged into one company.  I have to say, I love the videophone companies that I’ve worked for, but I had an exciting opportunity come forth that I couldn’t pass up.

    With CSDVRS, I have the opportunity to focus on VCO, which is voice carry over.  With VCO, I make and receive phone calls using my voice and the other party can hear me directly.  On the screen, an interpreter signs everything that the person on the phone is saying to me.   VCO has enabled me to participate in tele-conference calls for Hands & Voices, interview people from all over and chat with hearing friends directly.  Just recently, I completed a taped interview that will soon be going up online. So with CSDVRS, I have the wonderful opportunity to share this technology with others who will benefit from it.

    So if you’re planning to attend the Expo, stop by the CSDVRS booth and say hi!

  • Chris Wagner–Vice President of Marketing

    Photobucket
    Chris at the WSAD Picnic

    Chris Wagner is the Vice President of Marketing for CSDVRS, a video relay company based in Florida.  Chris is the company spokesperson and his job is to oversee media relations, marketing strategies and marketing materials.

    Chris graduated from Rochester Institute of Technology with a social work degree and for twelve years, he worked in the field of mental health.  In 1996, Chris developed the first nursing home in Florida to serve primarily deaf and hard of hearing consumers.  The 60-bed facility was initially designed specifically for deaf and hard of hearing residents but is now open to other residents as well.

    “I love what I do,” said Chris, about his job at CSDVRS.  “We have fun together and the company is growing very fast.”

    Chris also serves as the Vice President of the National Association of the Deaf.  From their website:

    With a background in healthcare administration, Wagner was responsible for the implementation of the first Deaf assisted living facility and a nursing facility for the deaf and hard of hearing in Florida.  Largely responsible for the creation of the Florida Coordinating Council for the Deaf and Hard of Hearing (FCCDHH), he was appointed by Governor Jeb Bush as the first member and chairperson of the Coordinating Council.  He also serves on numerous boards, which include stints as President of Florida Association of the Deaf, Inc. (FAD), Vice Chair of the Governor’s American with Disabilities Act Working Group (ADAWG), and most recent, as a member of the Board of Trustees of the Florida School for the Deaf and the Blind.  Prior to his election as FAD President, Wagner served as the first president of the Florida Coalition for Disability Rights. 

    In 2004, Chris received several awards for his outstanding leadership and advocacy on both state and national levels, including the first Claude Seale Advocate Award from the Florida Independent Living Council ( <http://www.flailc.org> FILC), the Robert Greenmun Award for State Leadership Excellence, and the Knights of the Flying Fingers Award from the National Association of the Deaf (NAD).
     

  • What I Learned from my Homebirth

    On Sunday, we celebrated my youngest’s son’s birthday. Eleven years. How time zips by.  Every year on his birthday, I always think back to his birth.

    I didn’t plan a homebirth at first.  I had my two other kids via cesarean.  Lauren’s birth was especially hard, because I had hoped to birth her naturally, but ended up consenting to be induced.  Post-partum depression reared its ugly head and I was fortunate to find a support group to help me through it.

    While attending the support group, I learned that several other moms had given birth at home.  One mom had two cesareans like me. 

    Homebirth?  Nah.  That was far too radical for me.  I was a good follower.  I dutifully took my kids to the pediatrician and followed the schedule for vaccinations.  I read the books on what to expect when pregnant.  I went for the epidural and the pitocin hook-ups each time.

    Then a little surprise–the lines turned pink on the plastic stick, the result of a New Year’s Eve party that we had at our house.  A welcome surprise though, as we had planned to have a third child down the road.

    While attending the support group, I began to dive into books about birth.  My friend Beth had briefly contemplated a homebirth and she handed over Sheila Kitzinger’s Homebirth for me to read.  The more I read, the more people that I talked to about homebirth, the stronger the feeling began to grow inside of me that I wanted to have a homebirth.

    And I did.  It was an amazing time, in more ways than one.  But I also ended up being induced at home, consenting to something that I didn’t really know I was consenting to.  Steven’s homebirth turned into a story that was published in Don’t Cut Me Again. 

    Birthing at home wasn’t so much the life changing event as making the decision to have a homebirth.  I was torn between doing what society perceived as safe (birthing in the hospital) and doing what my instinct was leading me toward.  Did I have the courage to break the status quo?  Did I have the courage to look within and make a decision that that felt right to me (and my husband), despite others telling me I shouldn’t? 

    Making the decision was a liberating moment for me. 

    When decisions come from within us and are not influenced by outside factors, we hold ourselves responsible for the outcomes.  We own the decisions with more rights than we could have if we allowed someone else to influence us. 

    So tell me, have you faced a moment in your life that shaped the way you make decisions?