We all woke up late this morning. The alarm didn’t go off–I guess I forgot to set it last night. We hustled around as usual and my oldest took off through the front door and hopped into the waiting Suburban. A few minutes later, my eyes grew wide, my mouth hung open and my shoulders sank.
I forgot my son’s birthday.
That’s right, my oldest kiddo is now 16 years old. I shipped him off to school without so much as a “Happy Birthday honey!” He didn’t have his phone with him, so I couldn’t text him. So I called his bus driver and left a message on his voice mail– to tell my son that I wished him a Happy Birthday.
So, to erase this awful Mommy-guilt, I went to Panera and bought his favorite sandwich and dropped it off at school with a note.
Happy Birthday to my oldest baby– you were born just yesterday!
For many years, I hid in the deaf/hard of hearing closet. I wasn’t comfortable dealing with the lone hearing aid that was given to me in fourth grade. During the school day, I hid the hearing aid under my thick hair and pulled off some impressive bluffing maneuvers. I would smile and nod along to conversations during lunch time and at recess. I did so well that the teachers often told my Mom that I was getting along “just fine in the classroom despite my hearing loss.”
When I look back at my early years in elementary education, I know that I had hearing loss long before it was diagnosed. I remember looking around after getting off the monkey bars, only to find all the kids lined up against the wall, ready to go back inside. I was the last kid left on the playground and I learned to calculate the time left at recess so I wouldn’t be the last kid in. I remember the kindergarten teacher coming over to tap me whenever nap time had ended. I quickly learned to watch the kid next to me and when they got up, I got up.
In second grade, the teacher had a reading session and introduced the book, “Curious George.” I couldn’t get the word “curious.”
“Erius George,” I repeated after her.
No, she said. She repeated the word and then went on reading. I stared at the book, seeing the man with the yellow hat and the brown monkey. I had no idea what the book was about or the interactions between the man and the monkey. It wasn’t until I had my first kid and obtained a copy of “Curious George,” that I finally learned what the story was about.
There are a lot of chunks of my life like that.
I’m sure to my teachers, I appeared to be doing pretty good in school. In seventh grade, we had a class where we each took turns reading a paragraph out loud. I would calculate the number of students ahead of me, count the paragraphs in the book and figure out where I needed to start reading. Sometimes I would get lucky and see someone close to me reading with their finger on each word and if I listened, I could follow along with the words. Then when it was my turn, I’d start in on the correct paragraph.
But inside of me, I know my stomach was churning and I was tense in trying to keep up. There were thousands of situations all through the school day, in after-school activities or on the playground where I was hyper-alert in trying to follow it all.
I’m sure today, there are kids still going through this routine– this coping skill that gets them through the day as “normal” as possible.
I can remember the day I came out of the deaf/hard of hearing closet. It was actually in college. I rode the bus with my hair pulled back in a pony tail and my hearing aid perched on my ear.
And I didn’t care.
For the first time in my life, I didn’t care who saw my hearing aid in public.
That was a turning point for me.
Over the years, I’ve met some people walking around with that closet around them. Any talk about being deaf or hard of hearing is a painful thing. They know that elephant in the room is there and they step aside so they can talk around it.
One only has to type in “deaf mom” on Google and they’ll quickly learn that Karen Putz and DeafMom go hand in hand. There would be no hiding the fact from a potential employer nor would I even try. Lately, I’ve been receiving emails from other bloggers, who share that they’re hard of hearing or deaf, but they don’t want to highlight that in their blogs for various reasons. Some feel that their hearing status has no bearing on their life. Others feel it’s a sign of weakness and they don’t want to share that.
“I don’t hide it in person,” says Holly Kolman. “It’s just that the internet is forever.”
After chatting with Holly, I learned that she had never published anything online about being hard of hearing. She was willing to discuss it for the first time online on this blog.
“Life with a hearing loss means everything is harder,” she explained. “Almost everyone takes it for granted that people can hear…it’s like expecting someone with normal breathing to understand what asthma feels like–it’s impossible. It is very socially isolating. People think that you’re ignoring them when you don’t answer and they take it personally.”
Holly recalled that some of her teachers did not understand what she was going through in the classroom. Over the years, they told her, “You hear what you want to hear.”
I’ve been told that too.
In sixth grade music class, we had a test where everyone had to listen to a recording on tape and then write down the beat times. The teacher noticed that I wasn’t writing anything down. She tried to explain what I needed to do. Again, I tried to listen along. Again, there was nothing for me to write down.
The teacher was upset. To this day, I still remember her words: “Karen, you need to turn your hearing aid up and listen!”
I told my Mom about this incident and she marched to the principal’s office the next day and explained why I couldn’t follow the music. The principal called in the music teacher and for some reason, he made me issue an apology to her. I didn’t understand why, but there I was, saying I was sorry. To substitute for the missed test, I had to write two 500-word essays on the piano and the guitar–over Christmas vacation. While my friends were enjoying a break, I was writing reports.
I think we’ve come a long way in terms of awareness, but I think we still have a ways to go to break down those closets that are still walking around out there.
I woke up in a great mood this morning, but now I’m grumpier than hell.
It actually started weeks ago.
Lauren came home from school with the news that the Project Arrow class was going to see “A Christmas Carol” in Chicago. I talked with the teacher and she agreed to arrange for an interpreter for the performance. Lauren wasn’t too happy about it, because we saw the play a few years ago with two interpreters and she didn’t enjoy it.
“It’s just not fun looking at the stage and then looking at the interpreters, Mom!”
Yeah, I understand.
So then Lauren came home with the news that the theatre couldn’t get an interpreter for the performance. The alternative was for Lauren to attend and read off the printed script. Another alternative was for Lauren to attend the play on the weekend, when the performance was interpreted.
Lauren wrinkled her nose at both alternatives. I didn’t blame her.
She asked the teacher if she could stay home and view “The Christmas Carol” on DVD. The teacher agreed.
Which leads me to the reason why I’m grumpy.
But wait, let me back up a bit and explain something. Our home library is in Plainfield, but we use the Naperville library for our main library. So there I was today, looking for the captioned copy of “The Christmas Carol.” Looking for captioned copies of any DVD in the non-fiction section is like hunting for diamonds. The large majority of non-fiction videos are not captioned or even subtitled. I grabbed three videos for myself, one was captioned, the rest were subtitled. While I was browsing in the DVD section, a librarian came by and asked me if I needed any help.
“Can you help me find the captioned version of ‘The Christmas Carol?’” I asked.
It took her but a few minutes to find the DVD. I took it to the counter, along with some other non-fiction DVDs I had wanted to see. Non-fiction–because according to the library rules, reciprocal borrowers (that’s us–because we pay taxes to the Plainfield library, even though we live in another town) can only take out the non-fiction DVDs.
As it turned out, “The Christmas Carol” was parked in the fiction section. Which meant it was a no-no.
I explained the situation to the librarian. This was for school, you see. I explained about the play, the interpreter situation, the agreement with the teacher that we’d view the captioned DVD while the others headed downtown.
“I’m sorry, you can’t take it out. You have to go to Plainfield library. Or, for $100, you can rent the fiction videos for a dollar each all year long.”
Let’s see–a hundred bucks and I could take the video home that day.
“Is there someone else I can talk to, a supervisor, who might make an exception?” I wanted to know. “I would be happy to bring the video right back on Friday.”
The supervisor turned out to be the librarian who helped locate the DVD. She called the Plainfield library and learned that they didn’t have the captioned version of the video.
I pleaded with her again.
“Do you know anyone in Naperville who can come in and check this out for you?” she suggested.
So I thought of my friend Betsy. My friend Nadene. I envisioned them dragging themselves to the library, braving the cold weather, all so we could see a captioned DVD of a play that we already saw years ago.
I sighed. I could see that the two librarians wanted to help. But the rules stood in the way. The ironclad rules that don’t bend for access, captions or not.
Imagine kicking back with a room full of moms. Moms who are raising deaf and hard of hearing children of all ages. Moms just like you.
Yes, that’s right. If you’re a Mom of a child who is deaf or hard of hearing, you’re invited to join a bunch of us gathering for Mom’s Night Inn, hosted by Illinois Hands & Voices.
What’s Mom’s Night Inn? It’s a weekend retreat/workshop filled with crafts, manicures, massages and…chocolate. While we’re having fun, we’re exchanging our stories, learning from one another and learning from deaf and hard of hearing adults. This year, we’re going to examine what we’ve learned on this journey of raising deaf and hard of hearing kids. We have a panel of deaf and hard of hearing adults who will be sharing how their parents’ choices shaped their own journey and career choices.
Julie Vassilatos, a mom who attended last year for the first time, took the time to write about her experience and pretty much sums up what you can expect from a Mom’s Night Inn:
The upcoming event will be held on January 24th and 25th, 2009 at the Hilton Lisle/Naperville hotel. And guess what, that hotel has a pool and a hot tub! If you want to join this fantastic event, you’ll have to hurry and register by December 15 to take advantage of the early bird rate. After December 15, the rate goes up. Space is limited– we like to keep it small enough so that we each get to know each other.
Now wait a minute, Karen–isn’t that a little crazy? Wouldn’t life be so much easier if you had hearing in the normal range?
Sure. Yeah. A little easier, perhaps.
But here’s the thing: I’m living an incredibly rich, full life. And that life includes people who are deaf, hard of hearing, deaf blind and hearing. When I was growing up, all of my peers were people with normal hearing. I had a childhood flush with a variety of friends, but man, I had to work hard to access every conversation. So I’m thankful for learning American Sign Language when I became deaf at nineteen, because that’s the moment the world opened up for me. It didn’t seem like it at the time, because I was thinking it was a pretty crappy hand that I was dealt back then. I hated wearing the hearing aid 24/7, but the silence was more frightening to me.
That silence came in handy when kid number one, two and three arrived. They were loud. Turning off the hearing aid became a thing of bliss. And when kid number one, two and three lost their hearing, for a time, I wasn’t thankful.
But today–today, I’m thankful. I look at my three kids and can’t even imagine them as kids with normal hearing. The hearing aids they wear are as much a part of them as their eyes are brown. The biggest difference between me and my kids is that they’re growing up with a sense of pride and confidence about being deaf and hard of hearing. I was the opposite– I bluffed and hid it every chance that I could when I was growing up.
Sure, there are days when I want to toss out the IEP papers and not have to remember who’s the head of the IEP team for which child. Sue, my friend who is a mom of three kids– one deaf, one hard of hearing and one hearing, tells me how easy it is with a child who can hear. No IEP, no IEP meetings, no searching for peers who are deaf/hard of hearing, no fiddling with technology, no stomping floors to reach out. A little easier, perhaps, but that’s about it.
Last night, when the evening began to wane, I was sitting around a table watching the hands fly back and forth and thinking to myself, I’m so thankful for the path in my life that lead me to all of this.
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!
Today’s post is from a close friend of mine, Sue Klytta. Sue and I met back in college and we’ve shared a lot together, including raising deaf and hard of hearing kids. We’ve had many conversations over the years about our kids and we’ve shook our heads at the twisting roads that we’ve gone down on together. We’ve made decisions involving our kids that we never would have imagined making at the beginning of the parenting journey. It goes to show that sometimes you’ll make difference choices at different times in your children’s lives. More than once, I’ve told Sue, “you need to share your story.”
So Sue kindly gave me the day off and here she is as a guest blogger:
Today, I am writing from the heart, as a deaf adult and as a mom to three children, one hard of hearing, one deaf, and one hearing child. Raising two children with a hearing loss, I often find that their journey is similar to mine growing up hard of hearing and deaf.
Lately, there has been so much joy on my oldest son’s face. Alex’s eyes light up. He smiles and laughs more. He signs more now. It’s so different today than it was a year ago. My son is hard of hearing. Last year, he started going to the Illinois School for the Deaf. He has been mainstreamed all his school years, he has never been in a self-contained classroom. His elementary years in school were fine, interaction with other kids focused more on physical play. In middle school, he had one friend who moved away. Once he started high school in our hometown, it was a whole different ball game. He became increasingly more isolated. He made less and less eye contact. He came home every day looking more discouraged. He cried tears of frustration after coming home from school. He stayed in bed and refused to get up. Today, he says he is liked by his peers. He can’t wait to go to ISD. I talked with Alex about his experiences at ISD. He summed it up for me very well, he said “Mom, I am liked”. He talked about how much fun it was interacting with other kids and how this school was changing his outlook on life.
My son Matthew also attends ISD. The first day I dropped him off at ISD, he looked so content. He now talks about his accomplishments with pride. His self-esteem has soared. This was a kid who previously hated to go to school. I had to drag him physically out the door and drive him to school. He said he felt invisible at his old school. He struggled to pay attention in classes and was diagnosed with ADD. I took him to a psychiatrist and therapist every two weeks. He was on medication. He suffered from poor self-esteem. No more! He loves ISD and his teachers are so positive about Matthew’s progress. I suspect that the deaf school works so well for Matthew because the environment fosters more cooperative learning and interaction. After a long talk with Matthew about his school experiences, I figured out why this new placement has made such a difference for him. At his old school, direct instruction was primarily used. Direct instruction is a type of teacher-centered learning in which the teacher is teaching a lesson and there is less interaction between students. Direct instruction is only beneficial when it is supplemented with cooperative learning methods. Group interaction is very important for learning. Matthew has told me that he feels free to interact in the classroom and he likes interacting with the other kids. He shared that he feels he is learning more. So with Matthew’s ADD, this type of learning environment has been very beneficial for him. As for the socialization issue, he is much happier. He has larger pool of friends to interact with. He is a social butterfly and this environment suits him well.
I feel like I know what both of my sons were going through. I myself was mainstreamed in my first year of high school with no support services and was the only deaf/hard of hearing student there. I was miserable. I transferred to a high school with a deaf program my second year. I quickly made friends with other deaf/hard of hearing peers.
Looking back, I realized that I never brought up my story in meetings with my sons’ teachers. I felt that this was about my sons, not me. But this is not just our story, it is the story repeated by many deaf and hard of hearing people.
This experience has been recounted many times by deaf and hard of hearing people like myself who grow up never meeting another deaf/hard of hearing peer. We talk about the experience of meeting other people like ourselves as “coming home”. One deaf adult I know talks about the feeling of coming home when she started meeting deaf and hard of hearing people at college for the first time. Another deaf adult was so lonely in high school, he transferred to the school for the deaf and learned sign language for the first time.
When I was visiting ISD, I attended the awards/graduation ceremony. I truly felt that we the deaf/hard of community were being acknowledged and honored. I felt valued. And I know both my sons feel the same when they are there. I did not feel this way when my sons were mainstreamed here in their home schools.
I am a deaf adult, I have traveled this journey. I was once hard of hearing, able to hear on the phone at one time. I have been in self-contained classrooms, I have been mainstreamed. I have been considered a “successful” oral child, I have learned sign language. I am now learning more ASL. I feel that my experience and the experience of many other deaf/hard of people is authentic and valid and I wish more people would reach out to us. Learn from us. We need to be heard. When I was growing up, I only met one deaf adult. And I am sad to say today, things have not really changed that much at all for deaf and hard of hearing children. There is no connection to the deaf/hard of hearing community. Frequently, there is no connection between deaf/hard of hearing children mainstreamed in their home schools either. Isn’t true that as human beings, we all need that emotional connection to those like ourselves?
While making the difficult decision to place my sons at ISD, I had moments of insight. My daughter is hearing. Everyday I would drop her off at her school. She was always so excited to go. I realized that she has a whole school full of equal peers. She would talk about the group of kids she sat with at lunch. She had friends sleep over at our house, they all would sit at the table talking and giggling. I realized then I wanted the same for my sons. And I knew my sons were not getting what my daughter got so easily every day.
I sometimes feel on the fence between both the hearing and deaf world. Every day I accommodate, I lipread so I can understand hearing people. I talk so that they will understand me. My son Matthew got the cochlear implant because he wanted to hear. I am considering one for myself as well. I also have a daughter, Katie, who is hearing. The hearing world is a huge part of her life and I honor that. She has a “second family” down the street. They are hearing and yes, they are part of her life. Hearing parents also need to give their deaf/hard of hearing children the opportunity to experience the deaf/hard of hearing world.
At the same time, I have respect for the deaf community as well. I am learning to be more proficient in ASL because my son Matthew is using it more now. I talk about deaf role models with my kids. My daughter is learning to sign more and more now with me.
When my sons grow up, I know in my heart they will not always be listened to and heard. I grieve that, because I know their experience will be the same as mine. Yes, it is a world where the majority can hear. Yet, they have so much to give and so much to teach others. It is my hope that other deaf/hard of hearing children will experience “coming home” with their peers. It is also my hope that when they grow up to become deaf/hard of hearing adults, they will have a “voice” and that they will be heard. And that they will be valued.
Yes, those are my kids at left. Aren’t they just adorable? I sent them all off to camp this week. Of course, they’re a lot older than they look in the photo.
Last night, the hubby and I broke out the Blackberry wine from St. Julian’s Winery and we watched TV in bed, sipping the fruity stuff.
We didn’t even have to lock the door!
This is the fourth year my kids have gone off to the Lions Camp. It’s only the second time for my youngest son. The Lions Camp is generously funded by the Lions of Illinois Foundation. Every year, my kids look forward to their week at camp. They come home with reams of pictures and stories about their fellow campers. All of the campers are deaf or hard of hearing, and for some of them, it is the first time they’ve used American Sign Language or hung around other deaf and hard of hearing kids.
This is the second full day that I get to blast my John Denver music without someone complaining that it is interferring with their TV program. The second day that I don’t have to order someone to pick up a half-filled glass and an empty wrapper. There’s no one around to holler at. Clean your room! Empty the dishwasher! Take the dog for a walk! Stop body-slamming your brother to the floor!
I have lots of good intentions of getting work done this week. The house also needs a serious cleaning and I’m working on an e-book. I expect my readers to hold me accountable to this. At the end of the week, be sure to ask me if my house is clean and if I’ve written 5,000 words.
However, as much fun as I’m having dancing around the house without someone snickering at me, I realize that this is a taste of life to come. Haven’t I said that before? This house is gonna be too empty without kids.
So, kids, go have fun at camp this week and Mom is gonna do the same. But when you come back on Saturday, it’ll be back to the grind!
”Hang up your wet towel! How many times do I have to tell you that the maid doesn’t live here?”
Greetings from beautiful Colorado! I am blogging this on my phone at the base of Breckenridge’s Beaver Run resort. The mountains are amazing at this time of the year. Many of the peaks still have snow on them.
I came out here on Thursday with my friend Beth who is also a board member for Illinois Hands &Voices. We attended the annual leadership workshop for Hands & Voices.
I’ll be sharing pictures in tomorrow’s post. It was an amazing weekend of connections & new friendships.
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