Please Ask Your Hearing Kids with DHH Siblings...

Dear All,
Leeanne of Hands & Voices is preparing a study of hearing kids with DHH siblings. Please take five minutes, ask them these questions and either respond by leaving a comment or email the response to jodi@rallycaps.net You may find some answers that surprise you, or this may give you the opportunity to have a really fine heart to heart with your hearing child:

1. What do you tell your friends about your brother or sister’s deafness or hearing loss?

Sofia (6 years old): When we are at the beach, I tell other kids that he can't hear them because he doesn't wear his cochlear implant on the beach.

2. What's the weirdest question you have ever been asked about your brother or sister?

Sofia: What's that thing on his ear?

3. If you could change one thing about your sib (or your sib’s hearing loss) what would it be?

Sofia: He needs to stop annoying me and pinching me. He has to stop putting his Playstation on while I'm watching a cartoon.

Note: Since Sofia has started first grade, homework time has become a nightmare. Her favorite expression has become..."You always help Jordan, and you NEVER help me."

Hmmm.

Um, Val...your situation has me a bit perplexed. Gage and Brook are both hearing and deaf, so what's your take on this?

Mother Warriors

(Don't know what happened, two posts got mixed together-anyway, this is what was supposed to come through)I know that many parents go through a mourning period when they find out their child is born deaf. They feel guilty, they feel like failures because they did not create the Perfect Child. Who is the Perfect Child? Perfect is boring. Raising Jordan amidst my friends with hearing children, I became increasingly more sensitive. My friends spoke of their child's progress, accomplishments, achievements...and I remained silent.
"Oh, my child won the Spelling Bee."
"My child got into private school."
"My child loves doing homework."
I was thinking...my son can go potty, he learned how to say the "S." So, I shared my satisfaction with my speech therapist and my son. Then, I found the Pediatric Cochlear Implant Circle and they truly understood our successes, even the smallest most insignificant success. It's so nice to be comprehended.

Naomi, one of the founders of the CI Circle and a fellow "Mother Warrior," writes a blog, and this was one of her posts:

He has no damn right to be that bright
Lovin this title and it came from a really good friend of mine and was made in reference to A.
Yeah he is a bright cookie, in spite of my parenting....afterall grown up mature responsible adults don't go around mimicking the voices of the Lego Darth Vader in the cafeteria video off the net, now do they??? well at least one does : - )

So the senior years of high school would be hard enough for any student without a hearing loss. A never does anything by halves, let's just make it even more interesting, let's see if we can have a go at the International Baccelaureate program (IB). The IB has as a component a foreign language and it is a compulsory requirement for the program.

He started Italian about 9 weeks ago. Last week was his first oral assessment. In true A fashion he put the time in preparing for it and wrote it all out. With spaces between lines it was about a page of writing. He had to introduce himself, his address, who is in the family, pets in the family and something about each member of the family - me he chose the word "bizarro" - yep and I love him too!!!

He cruises into my office at the end of the day and I asked him how the Italian oral went. He gets this flustered look on his face, runs his hands through his hair - at which point I am about to hyperventilate worrying about him - just as I am about to tip over the edge, this huge grin crosses his face and he jumps in the air, arms thrown upwards and a "Mum I aced it!"...

On the Oprah show, Jenny McCarthy said, "You've got to feel it to heal it," not an easy task...but such true words. As Mother Warriors we are mothers who are eternal optimists, who see the positive in every single experience we live with our kids...we grow with them.

Touched

Jordan Has a Girlfriend

Way too much drama in the comments section of yesterday's post, you know who you are (*smile*) so I'm taking a break to talk about Jordan.


On Thursdays he has his guitar lesson after school with an hour break for lunch, so I always take him for pizza and peach tea to his favorite pizzeria in the center of Grosseto. We spend a quality hour of Mamma - growing boy time and discuss "the latest." "The latest" is that Jordan has a girlfriend. She is adorable, her name is Alessia. There is only one problem, he refuses to discuss his new girlfriend with his meddling mother...me.



Our lunch conversation:


Me: So, you have a girlfriend...but really?




Jordan:

Me: Jordan, come on, tell me something...have you kissed her?

Jordan:

Me: Jordan, do you remember when you were DYING to ask Benedetta to be your girlfriend and I helped you find the words to profess your undying love??? Give it up to your Mamma!

Jordan:

Me: I don't believe that she's your girlfriend. I don't believe you, you always tell me everything and suddenly you're quiet. I DON'T BELIEVE YOU! *attempting reverse psychology*

Jordan: Mom, I'm a "guy" now, I can't discuss certain things with you anymore.



Me: (falling off of chair) Uh, okay...for now.

Breaking news:

Luca and I just had an emergency meeting locked in the bathroom where he handed me a series of crumpled passed notes. Last week, loverboy had asked Martina to be his girlfriend and she had said no.

Note #1:Martina, for now I need to leave you, sooner or later we will be boyfriend and girlfriend, but for now I must ask another girl to be my girlfriend. (he drew a pair of red lips on the note-what a stallion)

Marty: WHO?

Note #2: Alessia

Marty: NO!

Jordan: It's okay, I just said I was going to try.

Note#3: It's just for now, Marty.

Marty: Okay, but if you want to hold my hand, you can.

Note#4: WHAT??!!! You want me to hold your hand!!?

Marty: If you want to hold my hand you can.

Jordan: Ok

Note#4: (for Alessia with a heart drawn on it) Well, have you decided? You are beautiful.

Alessia: she x-d the Yes.

Done Deal.

(Note from a pissed off Mamma: I guess this type of stuff has been shifted to Father-Son instead of Mamma-Son *steaming*)

I couldn't decide between the two *smile*

Disney Pass: From the Mouth of a Child

Thank you to the mother who posted this on the Pediatric Cochlear Implant Circle...

Posted on Mon, April 28, 2008
Encountering someone different
By Dan Gottlieb
What is your first instinct when you see someone who is disfigured, deformed or just plain different? To look away? To react by rote?

Many years ago, waiting to meet a colleague, I was sitting in the lobby of Hahnemann Hospital, my briefcase on my lap, drinking a cup of coffee - when a woman in an obvious hurry walked by and put a dollar in my cup! She clearly didn't see a man in a wheelchair. She saw someone who was "different," and responded quickly.

I tell this story frequently because it teaches us so much about ourselves. Our brains are hardwired to react instantly to members of our species who don't look or behave the way they "should." When we encounter someone with a disfigured body or acting in ways that don't fit the expected norm, we feel distress.

It happens so fast that we don't even know what we're feeling. Our first instinct, however, is to find a way to diminish our distress. That's why, when I go into a restaurant, the hostess will often ask my companion, "Where would he like to sit?" The hostess makes eye contact with my companion in order to lessen the stress of facing someone who is "different."

Sometimes our reaction to the distress takes the form of anger or harsh judgment. Parents of children on the autism spectrum (this happened frequently to me with Jordan) tell me that when their child becomes agitated in a public place, they frequently get critical looks or even patronizing comments. The reason: Affixing blame can help diminish distress caused by the unusual behavior of others. It makes the world feel more orderly.

There is a price, however, and not only for the person who is judged or ignored. Stress is a symptom; diminishing it by judging, criticizing or ignoring others is merely a form of symptom relief, like having a stiff drink.

So what can we do? Since stress is hardwired, allow yourself to simply experience the stressful feelings without trying to avoid them. Make eye contact if you can. (This gets easier with practice, as anyone who works with disabled people can tell you.)

I have always believed that if you look in someone's eyes, you can find their humanity - and in that process, you can learn more about your own. If that woman in Hahnemann's lobby had been able to look into my eyes, she would have seen a fellow human, a quadriplegic who in fact has a great deal in common with her.

And one other thing about those of us who look or act different. My grandson Sam, who is on the autism spectrum, is almost 8 years old. He is generally doing well in first grade but still struggles in some areas. Recently he had some classwork that he didn't understand. Embarrassed about his difficulty, he took his book home without asking his teacher. When he spoke to his mother, not only was he embarrassed about not understanding the homework, he also felt guilty about taking the book home.

In order to assuage Sam's guilt, his mom explained: "Sam, they have a special piece of paper at school that says when you have trouble with your work, you can ask the teacher and she will give you extra help. And if you still have trouble, she will call me and I will help also."

But Sam didn't feel better. He began to cry: "Mommy, I don't want a special piece of paper."

Sam speaks for most everyone who is "different." None of us really wants that special piece of paper.

Mishka Outraged! Deafness and Disability: The Disney Pass

Paotie - hold onto your pants! I have never, in the eight months that I've been posting on deafread.com read Mishka get so passionate about an issue. She takes great pride in her ability to remain objective. The idea of Deaf individuals taking advantage of the system by using handicapped parking spaces or a Disney disability pass to avoid waiting in lines for rides REALLY pissed her off. Such a refreshing change.

Here she goes:

I was raised to be equal to my peers. I wasn't treated differently because I couldn't hear.
No, I will not use a pass because I am deaf. In fact, I will get infuriated if I see a healthy able-bodied deaf person using a pass to cut short the lines to the rides.

You see, I am also physically disabled. I remember one time Deaf people being surprised that I have a pass and demanded why I have it. They didn't believe me when I said I am physically disabled (talk about an invisible disability)

Here in MD, the Deaf Community tried to convince the State Assembly to pass a law permitting Deaf people to use the handicapped parking spots. When I found out, I was outraged. They can walk. Their excuse is that they cannot look back. Oh, really? Bullshit. You can use my eyes around and use common sense. I call that taking advantage of hearing people's ignorance to abuse the system.
Because I know what it is like to be Deaf and what it feels like to be Deaf and physically handicapped. There is a very BIG difference.

Yes, if I see a Deaf person abusing the handicapped parking lot or using the pass for rides, I will confront them. Using the pass for shows is a different story because they do need good seats to hear the performances.

Rides, hell no way!

As you can see, I feel very strong about this.

::::Stepping off my soapbox::::

There's more...

Well, legally deaf people are disabled, but they are NOT physically disabled that they wouldn't handle long waits. Shows and movies, I totally can relate to that because the Deaf people need the front seats to be fully accommodated. But regular rides? Scoff. Handicapped Parking? Scoff. I would be embarrassed if I abuse the system if I don't need itIt's not the way I was raised.. taking advantage of a system at the expense of others. Remember I said the physically handicapped people paid a price afterwards because they were forced to wait longer when hearing people saw how healthy deaf people were abusing the passes. They are not stupid and naturally they gave the employees a lot of grief. There are consequences when there are abuses of the system.

Hmm. That Mishka is one crazy bitch and I agree with her 100%.

MOM: Is DEAFNESS a DISABILITY?

With all of the discussions generated by the posts on Ethics and a debate that has ensued on the Pediatric Cochlear Implant Circle regarding "to accept or not to accept a Disney Pass for children with Disability" on behalf of a deaf child with a ci, I am curious to know the adult Deaf perspective on such issues. While checking out Dianrez's site for one of my posts, I found this:

Why do we say we are not disabled?
How is it that we do not regard ourselves as disabled? Is it because of the way we were raised, to be not different from other people? Is it because our difference is invisible and outwardly we look and move about like everyone else? What is the origin of this "not disabled" feeling? This attitude is so pervasive that we object to any surgery or expensive devices as less-than-successful attempts to "fix" us to meet Hearing standards.

The majority of the world considers us disabled, often to our consternation. When we say we want deaf children born to us, the world hollers in indignation, "HOW DARE YOU!?" They consider it extreme child abuse. Mostly, though, Hearing people take no notice and therefore omit making room for Deaf people in their communities. In an earlier time, people would shunt aside Deaf citizens, saying with impunity, "Sorry, we have no provisions for hearing handicapped people." As a child, I was taught, "it's a hearing world and you must adapt to them, not expect them to adapt to you." We were considered selfish and immature for thinking otherwise.

Yet, we gratefully accept special considerations such as schools for the deaf, colleges dedicated to deaf students, interpreters, government assistance, and electronic devices, among others. In seeking jobs, we willingly accept any extra help that comes our way. In public areas such as airports and meetings with public servants i.e. police, we tread with unusual care, mindful of bad experiences that our people had. Despite what we say, inwardly we seem to accept that we are different and that it means accepting help, if somewhat reluctantly.These special accommodations, some of which were legislated, are lifesavers for most of us.

Can we refuse them? Certainly we can, but what purpose does it accomplish? Will it cause people to finally believe we are not disabled as we carry on with pad and pencil, less than perfect speech, expensive aids and struggle to survive at the bottom of the employment applications pile? If we continue to insist we are not disabled, all that will happen is politicians happy to cut budgets and voters not noticing or caring.

Have those of you with deaf children or even you, yourselves ever used a "Disability Pass" to have quicker access to rides at a Disney World or other amusement park? Things got a bit heated up as parents asserted motives for using or not using the pass. Parents whose children have other disabilities in addition to deafness stated that they would never request a pass "only" for deafness. Another mother stated that she absolutely does not consider deafness a disability.

I posted this:
Re: Disney and Ethics: Pass or no PassI've been following some of the thread kind of in dismay. Deafnessis known as the "invisible" disability because it is in fact invisible. There are many ramifications associated with deafness that we as parents deal with on a daily basis. We as parents make decisions every single day to try to make the lives of our kids easier. This is not a black and white issue, this is a gray issue.

If my kid goes to speech therapy four times a week and suffers sitting in that high chair from the time he is twelve months of ageand we choose to take a family vacation to Disney to reward him andourselves for all of the fatigue and stress and work behind his "invisible" disability, I probably would consider getting that pass to avoid one more frustration in his life. But I'm not sure. Someone once said to me that when considering disabilities if a person sees another child with a physical disability, they go out of their way (if you are lucky) to help that person. How many times have you seen people frustrated or irritated by your child screaming or asking someone to repeat something that they missed? Deafness is a disability. Each child is different and each family's situation is different.Would I have thought twice about requesting a pass when Jordan was a 3 year old frustrated child? Yes. Would I request the pass now? No. Would I judge another parent for taking that pass? Never.

Another Mother wrote in response to yet another mother:

I agree that Disney having the pass is definitely a good thing. I don't think that anyone has said that it is not. For your child, it clearly is a need. For mine, though, it was not. I think the point that I and others have tried to make is that it isn't a perk we should take if we don't truly need it because it is unfair to those who truly do need it and because it sends the wrong message to our kids.

It's all in the message...how do we want our kids to view their Deafness?

FYI:
Six Flags changes its line policy for disabled patrons
Sept. 19, 2007
Six Flags Inc. has stopped allowing disabled patrons to skip to the front ofride lines and is now requiring them to get a boarding time from anattendant and return then, as any patron can do with the amusement parkcompany's "Flash Pass."The new policy took effect Sept. 7 and applies to all 21 Six Flags theme andwater parks, including Hurricane Harbor, also in Arlington, said Kendell Kelton, a Six Flags Over Texas spokeswoman.The policy was prompted by abuses, including patrons who feigned disability and others with disabilities who gave wrist bands allowing them to move to the front of lines to others who are not disabled, she said."We would get complaints from people in line or our employees," Kelton said.The change made for a rocky visit to the park Saturday for Joey Miller of Burleson, mother of Noah, 7, and Mallorie, 9. Miller said that her children are autistic and that Mallorie also has epilepsy. She said she bought season passes this year and took her children to the park eight or nine times this summer. "It is the only thing we found that they could do out in the community that brought some joy into their lives," Miller said.

Miller said she learned of the new policy when she arrived at Six Flags withher two children, two therapists and a niece. She said they had misgivings but decided to give the system a try. She said they went to a ride, booked a time to return and then left. But that didn't make sense to her daughter, Miller said. The girl threw herself on the ground and bit her therapist, Miller said."My children don't understand time," she said. "The things that are reasonable to us make no sense to them. Anything more than five or 10 minutes can be a screaming meltdown for my kids.""I knew we couldn't go through this on every ride. The stress could bring on a seizure for my daughter," Miller said. Park officials, however, said they hope the extra step -- having to make an appointment -- will cut down on cheaters and be fairer for everyone.

The Flash Pass option is essentially a reservation. Guests wait as long as everyone else is waiting, but not in line. Guests can leave and then comeback and get directly on the ride. Similarly, Disney theme parks offer a "FastPass." Most rides and attractionshave handicapped access, but in most cases guests with disabilities have towait in line like everybody else, said Andrea Finger, a Disney theme parks spokeswoman. Disney parks, however, may provide different accommodations depending on thedisability of their guests, she said.Policy for disabled park patrons Six Flags Inc. no longer allows park patrons with disabilities to move to the front of ride lines. Under the revised policy, guests with disabilities should seek a Flash Pass reservation and return to the ride at that time to avoid waiting in line.