It’s that time of the year again, the weekend where moms of deaf and hard of hearing kids kick back together! Registration is already half full, so act quickly to join in on this special weekend!
Illinois Hands & Voices presents:
Mom’s Night Inn
Saturday, February 20th and Sunday, February 21st (an overnight retreat!)
Holiday Inn Select Naperville 1801 Naper Boulevard
Naperville, Il 60563
(630) 505-4900
Event begins at 1 p.m. on Saturday, February 20th and ends at Noon, Sunday, February 21st
“Making Connections”
Educational
Technology
Family
Community
Dinner provided: Snacks, crafts, massage and so much more!
Sunday, February 21st; Will include a breakfast buffet and panel of deaf and hard of hearing adults sharing their life and work experience.
Remarks from last year’s participants at Mom’s Night Inn:
“It was great having time to relax and getting to know the Mom’s”
“I liked the small group activity; it was a good way to meet new people.”
“Meeting other parents, having an idea of what to expect and look forward to was my favorite part.”
“Now I know what to fight for.”
“Loved meeting the deaf and hard of hearing panel, their stories were inspiring.”
We hope you can join us, space is limited so register soon!
I’m sitting in a restaurant in Northbrook as I type this. I have just dropped off my daughter at the International Center for Deafness and the Arts (ICODA) and I’m passing the time as she practices for the upcoming Peter Pan play. Three, sometimes, four times a week, we make the one hour trek from our home to the tiny theatre where she joins a group of deaf and hard of hearing kids of all ages. Each and every time, she’s so excited to go and hang with her friends.
“Hey Mom, look at this neat ASL phrase I learned today!” she signs.
She’s picking up the lingo, learning the slang and gaining more and more confidence each day as she converses with the kids. This is from the kid who spoke entire sentences at the age of fourteen months and wanted nothing to do with ASL when her hearing suddenly went south at the age of four. She’s the hard of hearing kid who spends time yakking on the phone with her best friend from Texas, the one who is quick to raise her hand at school and jump into a hot debate– the child that I thought would never embrace sign.
And here she is, surrounded by a group of kids who are signing faster than the speed of light and she’s not shying away– she’s right in there asking them to repeat. Sign it again, she signs, when the rapid-fire signing “goes over her head.”
With a start, I realize she’s applying the same advocating technique that we’ve taught her over and over throughout the years– when communication doesn’t happen, change it so that it does. Ask for a repeat, ask for a re-phrase, ask for it in a way that gets the message understood. She’s soaking up the ASL and incorporating it– and loving it.
There was a time she hated it.
“Mom, don’t sign. I don’t need it. I can hear you just fine.”
It has been fun watching the metamorphasis over the years, how the diverse communication modes have weaved in and out of her life and how she’s grown and changed. I love how she’s been able to find her niche with a variety of friends– hearing, hard of hearing, deaf/Deaf.
I’m often reminded of something that I first heard from Janet DesGeorges and Leeanne Seaver about the parenting journey when it comes to making choices for our kids:
Nothing is set in stone.
Sometimes when we set out on a certain path, we think we’re heading down that path for a long time. And sometimes our kids lead us down a different path or change the direction in our sails.
Sometimes the time is just right for a new direction and as parents, we just have to give our kids the opportunity to explore all the different paths.
When I wrote that one, several friends emailed me and told me they couldn’t stop laughing. I wasn’t laughing too much when I wrote it, because I was overwhelmed at the laundry piles around my house. But hey, I learned a valuable lesson from that episode: do your laundry on a regular basis and you won’t have to resort to thongs. Or worse, commando, as Vicky once teased on Twitter.
When I think about what I’ve learned from laughter, there’s one episode in my life that stands out. When the three kids were younger, I often had days when I counted the minutes until the hubby would arrive home and provide an extra pair of eyes and hands in my quest to keep three kids in one place.
My oldest kiddo, David, was often on hurricane cycle. He would bounce from one activity to the next (like his Mom??) and leave a path of destruction in his wake. I once put the baby down for a nap and left David and Lauren parked in front of the TV so I could quickly go to the bathroom. I walked into the kitchen to find the two of them drawing wavy lines on the kitchen wall. In a matter of seconds, David had grabbed some crayons off the counter and coerced his sister into drawing artwork on the flat white builder’s paint. The artwork stayed on the wall for over a year– because neither the hubby nor I could muster up enough energy to paint over the crayon.
One evening, David was a category five and my patience was long gone. I was just trying to survive long enough until the hubby arrived home so I could hand off the kid duties to him. The hubby arrived home and surveyed the toys strewn about, the lunch dishes on the table and me with the harried look on my face. He could tell it was “one of those days.”
After a hurried dinner, I filled the bathtub up and went to grab towels from the other bathroom. As I walked back in, my eyes caught something floating in the bathtub.
I fished it out of the water, wiped as much of the wet stuff off as I could and started to cry. I sat on the toilet and the tears kept coming. Mothering three kids just two years apart had taken its toll and came crashing down on me at that moment. Just then, David came over, climbed in my lap and started hugging me.
“I love you Mommy.” He hugged me again.
My eyes went back to the book and I saw the title more clearly. “Don’t Sweat the Small Stuff.”
I started to laugh.
Alternating between tears and laughter, I smiled at the irony of the whole thing.
It is now years later– the little boy has grown into a young man– but I still have the book with the warped pages stuck together. It’s a reminder of that hectic time of three kids under the age of four–when I thought the day would never end and I’d never have a minute to myself. Today, the kids amuse themselves and there’s a little more time for me. How quickly the time flies, how valuable that lesson of laughter is.
Don’t sweat the small stuff. And remember to laugh in the process.
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.
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