Sit Down You're Rockin' The Boat- Part Three

So it is ten minutes before curtain. Over forty people were sitting in the section reserved for folks using the interpreter. I was having a great time catching up with friends when I saw the interpreters.

Down on the floor below the stage sitting in chairs. They must just be resting up for the show I thought. They were on a four inch platform which could not be seen from the reserved seats. Just in case I walked over and asked where they would be working during the show? Here they tell me. CRAP! I run over to a staff person and tell them the problem. If the show started the deaf people would not have any access to the interpreters! I was a wee bit angry as we ran through the school to talk to the director.

He seemed concerned and a bit confused. When I told him they needed to be lit he said he couldn't do that. Well lets just say I got a bit demanding. I was told they would take care of it and that I should go back to my seat.

The show started late but the interpreters were lit and on stage. I am sure
I now have a reputation as a crazy lunatic. Perhaps I am pushy or even ungrateful but for years this kind of thing has happened. I refuse to let my friends sit watching a mute play on my son's birthday. I would have preferred to chat with my friends and just enjoy the show. I hate making a scene but felt I had no choice. Such is life for a mama bear helicopter mom.

The mistake was that there was a mix up and the platform the director wanted was never built. Honest mistake but it should have been corrected before the audience even entered the theater. My advice to anyone working with deaf kids in theater is ask the mom and deaf kid first. I am happy to help and I am an expert on my son.

So everyone had a great time. Haddy's old Deaf acting teacher came and  a really cool friend sent a beautiful lei from Hawaii to the school. Haddy said it was an awesome night and for the first time he could see the applause.

Sit Down You're Rockin' The Boat- Part Two

So this is the second bit of my story about the interpreted night of my son's musical. Over the last thirteen years we have learned the complicated landscape of interpreting. This night would not break any records or instill me with new hope.

I was asked to show up when the theater doors opened to be an ambassador for the deaf audience. I had already planned to be there to greet friends. The bus from WSD arrives and a staff member runs with me to purchase more tickets because there were last minute people added. Awesome. On the bus an interpreter who had worked the rehearsals gave the kids a synopsis of the show so they could follow along and not hang on everything the interpreter offered. This was an iron clad plan.

What followed was almost funny .... it almost ... would make us laugh if it were a joke....... but it was reality. Our reality is different than other people's.....

Sit Down You're Rockin' The Boat- Part One

So my last post was about my son's birthday landing on the same night his musical was interpreted. It never goes off without a hitch.

Yesterday was the big day. Since he would be at school from 9:15 am - 10:30 pm I decided breakfast should be special. I was going to make his favorite, eggs Benedict! I woke up early and realized the refrigerator was broken and all of the food was room temperature. Not a good start so I dashed out for breakfast burritos.

I asked if it would be fun to have birthday at school. He tells me his friends didn't know. Well it turns out they did and they sang happy birthday in science, his facebook page filled quickly with well wishes. I have a feeling it was fun.

After school the cast and crew eat dinner. I brought cake. The volunteer supervisor approached me and asked what to do about singing to Haddy. I tell her we should sing. She looked a little nervous like she didn't want it to be a bad experience for him. About ten minutes before the kids lined up they started filtering in asking me how to sign Happy Birthday. Soon the food line came in and a senior jumped on a chair and shouted,
"Hey everybody! Pay attention. Today is Haddy's birthday, this is how you sign it." Then 100 kids signed and sang the  Happy Birthday song. They are working on a musical so I am sure you can imagine how beautiful that was.

So far so good. A magical birthday. I dashed out after the cake was served to meet my family and a good friend at a restaurant before the show. We had at this point about 40 people coming to support Haddy. The school has had him for over a year and I expected no problems since I had offered my help and the interpreters were well rehearsed. This was going to be awesome! I wanted to just relax and let him enjoy the night.
Well............... uh this is really a whole different post.

On Turning Thirteen

Hey Haddy,

You are 13 now. A blog for your birthday.

I am prompted to write tonight about my deaf son turning thirteen tomorrow. Before the sun rises he will transition into the land of teenish. I know that is not a word. It is a Mel word but it best describes how I feel tonight.

Thirteen years ago I was in a hospital overjoyed with my new sweet baby. Moments before and after many anguished trips to the hospital in not so beautiful Hollywood, a place with far to many potholes in the road and jaded nurses for a mama in labor, my son was born. To my dismay friends piled in the room and one who was a film camera operator took the opportunity to jump on my bed and shoot the photos from the best vantage point not realizing the slightest movement was a jolt to me and my baby and perhaps the privacy of a birth takes a wee moment to clear away.

So the real point I want to make is tomorrow on my son's 13th birthday 35 seats have been reserved for the interpreted night of his play. The seats are reserved for folks who will be using the interpreter.

For years I have been trying to find ways to bring the hearing and deaf worlds together but in ways he can still be deaf. In ways he can be part off not an accessory to the world. On terms that both hearing and deaf can enjoy life together. There always was a hitch or red tape.

Last year he wanted to partner with WSD for a blended play. A lot of red tape later he was able to come with his teacher for one workshop but the kids loved it. A baby step.

When WSD came to buy tickets they needed a receipt and the person who could provide that was in a meeting. Red tape. It was resolved and the tickets were purchased. The art school thanked the deaf school for their support.

It just makes sense that as he moves into the world of teen, the world of more independence this is happening. Maybe just this one night but I will take it. One night both worlds will live as one in a way that feels right. A deaf actor will enter the stage and play a deaf role. A deaf audience will enjoy the show with rehearsed interpreters. And maybe there will be red tape or a glitch but I will take it.

No pressure Haddy. Break a leg and Happy Birthday.

I  love you,

Mom

Fire!

I remember one time I went with my family to Seattle to go to DeafNation. Haddy was going to preform his poetry and we were going to see friends from Los Angeles.

We dropped the kids at Grandma's house and ran for the hotel! Adult time..... nice. We met up with our friends and separated into groups that would stay at the hotel, go to dinner or go find a bar. My hubby ended up with the bar group.

I was socializing with some girls at the hotel around 12:30 am. Yep, I had a few cocktails I was socializing. Life was good. ....

Above my head in a friends room the fire alarm starts blaring. I tell my friends and jump up on the bed to cut if off so I can call the front desk. The woman I talk to tells us to file out to the hall and come downstairs, use the stairs. I tell my friends and out we go. In the hall was a tired group of hearing people making their way to the stairs.

Down in the lobby folks were directed to go outside. Stand in front of the hotel they tell me. I tell my friends. The odd thing is I don't "interpret " for my friends. If I am going to lunch with a deaf friend I don't order for them or help them get a refill on their soda. That night the hotel was a "danger zone" and I just stepped into that role. Who am I to do that?

We were outside cold and deflated because we had been having fun and now we were concerned. We mentioned there were other deaf folks in the hotel. Maybe a lot. So we went to the front desk to ask. How about the other deaf people? Do they need to come outside? We don't have enough staff they tell me.  Is this a real fire I ask? We don't know they tell me. So what about the other guests? Nothing we can do they tell me. Serious I ask? Yes sorry they tell me. So if the hotel is on fire you will just let them die?

The woman at the desk decides it is a good idea to give me and a friend keys to all of the deaf people's rooms. Wake them up she tells us. Get them downstairs. Huh? I am not comfortable really going into their rooms. I don't work here. My deaf  friend tells me to just do it. Run she says. So we do.. I remember running down the halls. It was a deaf event that weekend so there were many rooms. I opened doors and woke up folks deep in sleep. We managed to wake up everyone.

Then outside there was a large group, deaf and hearing. Hands were flying trying to figure out what was happening. One man came out fully packed for the airport thinking my nighttime disturbance was his wake up call for his flight.

My husband walks up with the bar group. What is going on he asked? I don't know I tell him. So we wait. The fire department arrives. They find the "fire". An ice machine malfunctioned.  We will all be safe. Go back to your rooms they tell us.

So what if the hotel was really on fire. I was told there was one accommodation kit. One box full of the emergency stuff we seem to never need.

OUR COMMUNITY ROCKS! *oops sorry that was my outside voice*

Sorry for shouting. I am just so excited. I emailed my son's old school, WSD (the one in Washington) about his principal role in his school's musical, "Guys and Dolls". For the last year he has preformed for and with hearing people. That is really cool but....... he needs his Deaf community. To have his community witness is big. He is Deaf. He always looks out to see if anyone is out there using the interpreter.

There is one night that the show will be interpreted. The school has been doing this before my son was accepted with low turn out. We have gone to interpreted theater shows before only to find out the interpreters are cast off in the shadows or the show is to complicated for the one high school kid on stage. This time I am told it will be different. They are building platforms for the interpreters so the will be high enough to see. The interpreters know the dialect of the school. They have the script. Please let this be a great experience for all.

Today I found out 28 people from the school have committed to come! That means money collected. So I race to make sure the seats are reserved in the right place. I beg the school to hold the tickets until they get an official school check to pay. I can't go into detail about the red tape of a state school .

Then I sit back and think about the one friend who made that happen. She has dedicated her life to the school and the kids. She was my partner in crime when I wanted to add electives about art, acting and cooking. She never backed down no matter how crazy my plan was. She is the one who makes Special Olympics happen. She is the one who can takes on the kids who have had it the hardest. She is dedicated to the kids in a way that doesn't leave her when she goes home. I love her. She is an SLC. Student Life Counselor in her case means a truly beautiful person.

Hearing in Pairs

Last year a student at my son's school wrote this. Of course a tech advisor would have helped but how cool the hearing kid who wrote and directed this ..... Haddy was very campy and his hair!

No I Am Not Italian My Son Is Deaf

I have a funny habit. When I am out in the world, maybe miles from my son, I will spontaneously start signing while I am talking. Some folks have told me they just thought I was Italian. Yea, the tall faired skinned Norwegian who can't make a decent pasta sauce.

It often happens when I get excited about something. Last week I attended a committee meeting. I had an idea and bam! The fingers start flying as I verbally explain my latest brainstorm. I am not signing in ASL just doing a sort of simcom thing.

At my daughters carnival  I caught myself signing to her Spanish immersion teacher peppering in what little spanish I know. Yes I realize I am a big goof but it is out of my control. It is as if I think the teacher will better understand me with sign support.

Last week sitting in my mom's lawyers office talking about the interact dealings of elder law I did it again.

"Oh the hand thing, I have a deaf son"

I do it when I am eating. I will be talking and take a bit of food then stop talking and continue in sign.


This got me to thinking about when I was first learning. My husband and I committed to trying to sign everything we said. This was a frustrating few months. It was almost painful. We had text books and dictionaries in every room. We learned to make sure the books were published on the west coast where we lived. Sometimes we would learn the sign wrong and have to backtrack. Becoming conversational seemed like an almost impossible goal at first.

Then almost overnight something clicked. We were able to have conversations! We could turn our voices off at dinner. We still fumbled and made mistakes but we could see our goal in the horizon.

As time went on we become more comfortable. It became more natural and now it is habit. So much so I do it without thinking.

A New Language Emerges

At my son's school a lot of the kids are taking ASL and because of this his social life is active.

Over the last few nights as I watch my son walk out of rehearsal I have noticed him signing away with one of his friends. The other kid is hearing and they became friends this year. I knew this kid was learning to sign but what I saw startled me. They were conversing at a normal pace but not in ASL. They didn't appear to be using PSE. In fact for the first time I didn't understand my son. The boy finger-spelled a couple of times and not in the halting way a hearing person who is learning does. Their conversation flowed in the most natural way. They were so engaged. I asked my daughter to look and tell me what they were saying. I usually don't ease drop on my son but this was too weird. She wasn't able to figure it out either.

So maybe my tired eyes deceived me but it look like they created a new language. I will call it VSAASL (Vancouver School Of Arts And Academics Sign Language). Maybe I will contact Oliver Sacks to research it. I am sure he would take a look and tell my I needed to get some rest and the kids were just swatting at mosquitoes. I am sure my son would tell me they were using PSE and I need new glasses.

I love the way this deaf kid and the hearing kids at his school don't let hearing lose get in the way of a good time.

IEP= Tired

Today was my son's IEP. Every year we sit at a big table and dig through the many details of his education. Today for two hours we preformed this well rehearsed task. I am really tired.

The cool thing is the district is awesome. There are a couple of issues regarding team interpreting for lectures but really given the red tape it takes to get approval I am impressed with the services and attention to detail the special education folks provide. They have years of experience with deaf education and listen to me when I have an opinion. For the first time I really feel like everyone at the table really wants my son to get exactly what he needs and has the power to make it happen. There was even a general education teacher at the table who is very dedicated to my son. She has done independent research and is determined to do the best she can to make sure my son's experience is on par with the other kids. Amazing. I walked away knowing everyone is learning but that I can trust the learning is happening, even with me.

It has been years of figuring out how to communicate my opinions that got me to this table. This is why I am tired tonight. I have researched for years. I have learned the law and jargon. This is a component of raising a deaf kid that only a parent really at the end of the day understands. It goes beyond your child's development and progress into a whole new academic world. A world that is foreign, off your radar.

 While deciding on how you will raise your child you are also called on to protect that decision before you even get a real understanding of what that decision is. You are left to figure out how to negotiate, how to get to yes. You have to develop tools to ascertain who is really knowledgeable and who is intrenched in personal bias. You have to wiggle around "privacy" issues to get to the heart of why things happen. You have to hope you can create a team and not  adversarial chaos. The most important thing is you have to do is

Leave your emotions at home.


So I am tired tonight after a good IEP. I walked away with a sigh of relief and grateful hope. My son skipped his meeting for the first time. He had a twelve hour day today and he was stuck in rehearsals. He was a bit ticked about missing it but the law has requirements and his birthday is sneaking up. On that night his show will be interpreted for the community.

Public Accommodation Does Not Apply To Pac-Man

I always tell my son he can try anything. I tell him To go for it. Most of the time we are all pleasantly surprised. Sometimes a wee bit disappointed. Halloween was just a really good laugh.

He really wanted to be Pac-Man. So the costume was built, at the last minute. Now take a good look at the picture. Could he have made it any harder for him to communicate? Remember my son is deaf. Notice the lack of visual access and the hands. He went to a party with his friends from school. He tells me that when he would go to doors with them he would get stuck in the crowd and not be able to turn to look behind him to leave. He fell down, the costume eventually ripped. We had a really good laugh last night he about his adventure. Good news is the costume was a hit and he had a blast and because the costume ended up destroyed I don't have to store it in my basement.