Thursday, October 29, 2009

A Little Input Please

About 10 years ago.......

I was that friend. I was one of the only friends in my circle that had a child. The result was everyone wanted to take part in his life. At times perhaps our focus was a wee bit extreme.

Before we had children we would host elaborate dinner parties. I would spend the day shopping and preparing food for my friends. Only the freshest most exotic ingredients would do and only the most complicated dishes would be set at my table. The place settings were carefully orchestrated and the beverages served were chosen by course. The conversation would at times make a sailor blush. Often satiated from a good meal we would hit the town. Often myself crammed into 4" heels with ridiculous attention to handbag and excessive accessory choices. I was hardly the candidate for mother of the year.

Along came my son and with him an intense Passion and Love. Our dinner parties continued but the Crystal was slowly replaced with cheap glass and a sipee cup. Instead of venturing out into the Hollywood night we would stay anchored to our home and any friends left would be hostage to ......


This was ritual we started when we did some research about literacy and deaf children but was so much fun we often forgot the purpose. Every night we could manage we would act out stories as a family. One way to internalize the concept of story, beginning, middle and end , was to act out the story after you read it then write a story together based on the concept. On any given night friends would become the wolf or pig in a favorite classic tale. They would shed their designer shoes and prance about like a princess in distress. These home plays laid the foundation for my son's love of narrative.

I look back and wonder why they did this with us. I can't answer that but I do know my son loves to read. He also uses reading to get information when hearing people don't inform him.


Well my son was cast in a dinner theater production. He is much younger than they company usually allows and they are making an exception to the rule because he is so passionate and gets the style. I know it is a privilege that he is in the company.

I asked if there was a night his deaf friends could come watch. The director said maybe every night because he is acting.

Here is my question to deaf actors,

It is a Cuban improv theater form. They have changed it from theater in the round for my son to 3/4. The actors have options for response to lines but only get them the night of performance. The other actors will respond to what is tossed at random. How do we make this accessible to deaf people? There is no way for interprters to rehearse.

Much thanks for help

A very confused mama

A little input please......

Tuesday, October 27, 2009

Why Are We All So Scared?

About 10 years ago......

One reoccurring theme we encountered going to workshops and panels was an underling fear of the unknown. Parents seemed horrified that their children couldn't function in the world without speech and yet we knew there were many deaf adults who did just that. They didn't ask how the deaf population navigated daily tasks but searched frantically to find ways for their children to fit into their hearing lives.

We really wanted a deaf mentor and the district was baffled by this request. They wanted to help us but were not set up for this service. We found that the simplest request was always resolved with complicated watered down versions. They didn't have anyone on staff qualified for this position and they told us in order to have this service it had to be a district employee. We were told we didn't need this service because we had made deaf friends but I explained that we didn't want to ask those friends the kinds of questions we were curious about. We needed a guide that could answer the most basic questions without us feeling awkward and invasive. The first candidates they offered as deaf were people that didn't depend on ASL or hearing people who promised to voice off with us. The problem there is after a short time we would stop signing. They didn't give us a clear picture of what our son would look like as an adult.

After a bit of frustration we ended up with 2 awesome deaf adult mentors. One was hired on by the school district at our request. He was a college student who would later teach at the local charter school. We also had a young woman who worked as a office clerk at district offices.

Looking back I am struck by how nervous we were. At a first meeting with the student I watch every movement of his hands for fear I would miss something. At one point he gestured towards his nose and I was lost. I stopped him to inquire what that meant. Uh, he was itching his nose. Right, note to self, relax. He told us of his childhood and education. He revealed many frustrations he overcome dealing with hearing people. We used this information to help us define a parenting style.

The next goal was to get out in the world and learn how deaf people negotiate the daily tasks we take for granted. At the time we were curious about the most simple things. My son will laugh at this because he has no idea how clueless we were. Our other mentor went shopping with us to the little produce markets in our neighborhood. These shops were small and run by families often who spoke English as a second language. The owners were a bit grouchy but my son loved to go there. There was a well known restaurant with a bakery that gave free cookies to children and he would run to the counter every time waiting for this treat. This sort of adventure always included us talking and interpreting for him.

We first went a produce store. As we walked down the street we chatted. She was so confident and didn't notice people starring at us. I asked her about that and she said it happens all of the time and she doesn't pay attention. We entered the crowded shop and as she bent over to look at something she bumped into a woman behind her whom she didn't see with her bag. The woman said something rude and on impulse I started to intervene but was able to hold myself back and watch. The mentor had no idea what had happened, didn't hear the comment and just continued on her way. She paid by looking at the readout on the register. Well that was easy. Next we went to order lunch from a deli. Again I had the impulse to interpret. Again I held back and watched. She indicated she was deaf and showed the cashier she wanted to write a note. She wrote her order. Easy. She wanted a straw and made a gesture the cashier understood. Done, again easy. Every place we went she made it so clear there was no issue. Over time we learned about interpreters, ASL etiquette and deaf culture. It wasn't a long time but it set us up with tools which made it so much easier and relaxing to parent our son. The one element of this service that made it work was the mentors were deaf and used ASL to communicate.

Around the age of three we started having him order for himself by pointing. We taught him how to pay in stores.

Today .....

I am always shocked at peoples reactions to my son. When we go out for pizza it is his job to get the box for leftovers. If a hearing person is with us they almost always leap up to help him. I always stop them. They always look shocked when he comes back with a box.

At one parent workshop at the deaf school a mother of a thirteen year old who was very ASL was surprised to hear my son orders for himself at restaurants. She realized she had never let her son do that and felt bad. She also never had any sort of deaf mentor.

At the same workshop I was so sad when I had to interpret for a 10 year old who was asking her dad for some cake.

We still are grateful for our deaf friends and their willingness to help us. So many times I have asked questions and asked for guidance. We are not deaf but with a little help we have found a way to live as a happy deaf/hearing family. With a little help we live without fear of the unknown.

Saturday, October 17, 2009

Uh Not So Funny At The Time

So today my family went to Deaf Expo/Nation. I was home sick. Before they left my husband and I were laughing about our first time going in Los Angeles. We were so nervous and bought up everything. My husband was laughing about navigating with a stroller. It was a huge event in a big city. Here it is smaller and we don't need to buy anything (sorry sponsors) and my son performs and sees his friends. We are not desperate to find Deaf culture because we crossed that bridge. After they left I remembered an Expo in Seattle that we attended and the crazy story we took home. This story reminded me of why hotels were a menace when my son was young.

About six years ago......

The Expo alternates between Portland and Seattle every year. About six years ago it was going to be in Seattle. We had friends working it flying up from Los Angeles so we booked a hotel room at the same hotel the vendors were staying at. We also had friends from Portland going so I know the hotel booked a lot of deaf people for that weekend. We left our son at grandma's for the night so we could socialize.

We had a busy social schedule the day before the expo and when the night was coming to a close a group of my girlfriends decided to let the husbands sleep so we could stay up and chat. We were in one of our rooms deep in conversation when the fire alarm went off at 12:30am. I was the only hearing person so they had no idea of this alert. I jumped on the bed and pointed to the alarm and told them there was an issue. They looked at me like I was crazy so we went to the hall to see the flashing lights and people fleeing their rooms.

*the flashing lights do not work if the person can't see them in their room....just saying....*

So we go down the stairs and file outside. One friends realizes that the hotel is full of deaf people sound asleep. We run to the front desk and I ask if this is a drill or if there is a fire. The woman tells me this is for real. Well crap, I tell her did you notify the deaf guests? No she replies. I explain that some of their guests can't hear the alarm. She tells me the system flashes. They were getting ready to leave and couldn't stay in the building.

*guess my response*

She tells us her hands are tied.

*you got that right*

My friend and I are freaked out and tell her they need to notify the guests. She then proceeds to give us their room keys.

*uh what?*

We were told to go to their rooms and wake them.

*conversation between friends freaked out because we had peoples keys*

So we did. We ran as fast as we could to the rooms waking up folks we didn't know, invading their privacy. When we finally got outside the fire truck were there and one man walked out fully dressed for his shuttle thinking I had woke him for a wake up call, he was ready for work. It turns out the ice machine had caught fire and set off the alarm. There was no danger to the guests had I not heard it my friends would have continued their evening with out interruption.

*what if the fire was life threatening?*

About 10 years ago.....

We traveled a lot and hotel rooms were the norm. We learned early that people would see our son and want to give us the handicapped room. We also learned that if we had that room he could reach the locks. As a toddler he was very curious. So we always made it clear that we needed a typical room.

Once in San Diego we had a beautiful view of water and boats. My son enjoyed the deck where he could watch the boats float by. He was walking now and loved to explore hotel rooms. He found out there was a television in the bathroom and was fascinated. The door shut and he locked it.


We were not really aware that we were different. He was our first child so everything was a learning experience. Daily life was really fun. A hearing child would respond to a parents command but what would we do? He locked himself in the bathroom and could get hurt. My husband called the front desk for help and while we waited we did what any parent would do ...bribe.

My husband suggested we draw pictures to him. The first was harsh about how wrong he was. We slipped it under the door, nothing. This went on for a few minutes then I drew a picture of a boat floating by and slipped it under the door.....


He opened the door and ran to the deck.

I have the flu so off I go to bed.....forgive any typos please....

Friday, October 16, 2009

Chaplin at the Expo

About 11 years ago.....

When my son was about one year we were frantically tying to find deaf culture. We were told by our case worker to go to Deaf Expo.This was the first time we were surrounded by deaf people. As we entered the room we felt overwhelmed and intimidated. Our son was sitting peacefully in his stroller wearing his little blue ear molds. We had been trying to do everything right for him and this was part of the deal. The first thing we noticed was large circles of people blocking the aisles signing. We couldn't pass without disrupting them and had no idea of the etiquette needed. I was buying every book and device I could get my hands on and the transactions even made me nervous because I was very insecure about my limited signing. I must have apologized a thousand times. Everyone looked so at ease and we felt like outsiders.

We were just starting to feel relaxed when two men who appeared to be in their fifties walked up to us. We were used to people approaching us because my son was a cute baby so it was a complete shock when their faces became hostile and one man pointed to him and gestured for us to throw away his aides. We were deer in headlights for a moment then something really cool happened.

A week before we were guests on a panel for college students studying deaf education. After the panel a line of deaf students formed a line in front of us offering to help. Well it turns out one of the students was working at a booth right next to where this confrontation was happening. She swooped in and told the men that we were doing the right thing and they needed to support us not ridicule. They apologized and added the aides were evil, then walked off into the crowd.

We have attended this function every year since.

2 years ago...

Eight years later when he was nine my son performed his ASL poetry at Deaf Nation. He chose a word poem, number poem and a comedic sketch. A wonderful deaf man who had taught him acting drove up in the worst traffic for no fee to coach him before the show. My son considers him to be brilliant so this was an honor. My son had created his work but needed a deaf adult to fine tune his stories. I sat and watched them work and saw my son as a different person. I was so touched this man would sacrifice his time to help him and grateful for his gift.

The day was wonderful. After his performance people swarmed him and of course we were proud parents. So were his grandparents who really didn't understand what he performed but understood the reaction from the crowd.


Tomorrow he will perform again at Deaf Expo. We enjoy this event because it is a place where our family can relax. We catch up with old friends and check out cool new technology. We don't have to wait for interpreters and my son doesn't have to be patient with hearing people. His is thinking of a poem about Cuba (the theme at his new school which he is fascinated by), an ABC poem based on Chaplin's "Goldrush" and a comedic piece based on the style of Chaplin, his first hero. He rarely chooses deaf as a theme but more topics that resonate with him. When he expresses himself this way often deaf people resonate with him.

Some of his hearing friends from his new school will go . The expressed how nervous they are because of their limited signing. They may apologize a million times and ponder how to walk through the circle. If you see them please let them know they are doing the right thing.

Sunday, October 11, 2009

Keep It Simple

Off topic, I can't spell to save my life and I don't edit well. In the 7th grade I was awarded the most creative spelling award. One reason I don't write often in my life is because I am much more articulate in person. So that is my disability and I am grateful that folks are so patient. The funny thing is my son will sometimes walk in on me while I am sending an email and edit my English for me.

About 11 years ago.....

So we thought it would be so simple to add a language. We thought intervention services would be a great resource. We also wanted to involve the people who he often had contact with. There were a few problems. Our friends wanted to learn but didn't want to go to classes and we felt bad they had to pay. I worked all week a minimum of 14 hours a day so the only time I could take a class was on the weekend.

At first 2 friends signed up for a community class with me held on Saturday. The teacher was hearing seemed a bit nervous. She was explaining her back round and used the sign for who instead of hearing. I knew of her mistake because I had been studying from a book. At one point I raised my hand and asked how I could sign if I was holding my baby? She got flustered and reprimanded me for going off topic. Later when I started teaching parents that was always a question asked one the first day. I understand what it is like to wait for simple answers and love to answer that question. I call it mama sign, one handed manual magic communication. So my first sign class was useless and the teacher wasn't qualified.

As for our friends we wanted a group sign class at our home. My plan was to bust out a beautiful brunch every Sunday to entice my friends. They were all excited at the prospect of learning in a comfortable setting together. While we waited for the district to approve it I called GLAD and asked for help. I wanted to hire a teacher right away. We found someone but he was hearing and and not a real teacher but an actor. He was awesome but not deaf.
We finally got our teacher. A deaf adult with deaf children. The reason a deaf teacher was so important is it forced everyone to do their best to communicate with him. He also liked to joke and tease which was a really great way for us to get a view of a deaf person outside of a study or statistics. The one memory of sign brunch that really sticks out is how to get my child's attention when he is running from me. I asked this in a very serious tone because I was so worried he would run into the street and I couldn't call him back. The teacher laughed and said at his home he had a bunch of bean bags. He would just toss it past the kid and they would turn. If they were really in trouble he would toss it at them. Had it been a hearing professional the response would have been really different.

So over the course of a year our friends learned to sign and understand who my son was. For this I am grateful.


So the one thing that was a struggle for every year was getting an ASL curriculum in the school. Hearing children are taught English as a language in school but my son was expected to just pick it up. When we left our Bi-Bi program in L.A. they helped me fashion his IEP so it had ASL goals. My fear was if we didn't already have goals they could deny service. The problem is if it doesn't exist it doesn't happen. He has never been taught his native language as a subject in a way that is effective.

So in 2 years he needs to pick a foreign language. He is having to decide early so the school can accommodate. Right now it is between ASL and Spanish. If he takes ASL he will be bored but the teacher assures me she can have him assist and learn grammar. If he takes Spanish they have to find a way to teach it. Either way he will fulfil the requirement and learn in the process.

I welcome any thoughts on this. So far he just fits in but what about this language class? If you are stopping by and happen to have some feedback I will send you a cupcake.

Saturday, October 10, 2009

How We Ended Up Here

This is maybe a good point to mention how we made our choices.
When we found out he was deaf it was a Friday, if we waited for information until Monday to call Early Intervention and more time for an appointment we would have pulled every hair out of our heads. This gave us a gap of time to do some research on our own with no bias. We had enough time to sift through everything available to the general public.

At this time babies were not candidates for implants so that was not on our plate and we had no personal experience with deaf people to influence our view either way.
We also lived in Los Angeles and knew folks from all walks of life. There really was not a "normal". I owned an art gallery and worked on a TV set. My husband wrote and worked camera. Our life was not set in stone so change was maybe easier for us than some. We didn't need a comfort zone. We didn't really have a blueprint for what are son was suppose to be.

Something we did that I feel helped a lot to move on from the shock was to look deep and think about what we really wanted as parents. We realized we didn't loose anything important but we did gain a beautiful baby. We also felt it was not our right to try and force him to fit us but our responsibility to fit him.

The story may have been different if we called the same day and had an appointment a day later. If we hadn't started to sign or look into resources we would have been a captive audience. Much like going to the dentist. You chose gold or porcelain fillings but trust the doctor to fix your tooth. You don't even see what he is doing in your mouth but you are present through the whole thing. You brush your teeth often but if you don't they fall out. It could have happened this way if everyone moved faster.

I was really frustrated because the intervention program was set up in a way so that you had to ask for information. Instead of laying all of the facts on the table and letting you chose you had to go find information then ask for support. A lot of people told us we should sign but really offered no way to do it effectively and offered very little in the way of projected outcome. Signing was like a side dish. The staff was hearing or oral so we didn't have a realistic model for a successful deaf adult who signed as a primary mode of communication. They also projected this patronizing energy like they expected the children to be delayed and the parents to be weak and needy. The did not offer age appropriate benchmarks for typical children but focused on trivial small accomplishments. In the beginning they loved us but as we grew more independent and stretched their beliefs they viewed us a trouble makers, insane, out of control. We felt in order to have the best outcome our approach had to be pure and that was not something they could even provide.

If we felt ASL was our goal we would have to do the work ourselves. So we read and interviewed people. We visited schools and attended workshops. It was very time consuming and if I could I would give each new parent a condensed version in a format the could digest. The first thing they should know about is about possible outcomes not the speech banana.

In our research and interviews with deaf people we noticed this,

Deaf children with deaf parents tend to do better in school

Deaf adults raised with ASL tended to reflect on their childhood with joy. They were more inclined to joke about hearing people and deaf people. They were more likely to encourage us. None expressed a desire to hear and all had active social lives. They did not patronize us like the professionals. It was a bit difficult to find these people at first but once word got out is was easy. Hearing parents we later met who chose to sign seemed so relaxed and happy.

Oral deaf adults were generally grateful, so grateful for all the hard work their mothers did but expressed the grew up isolated and lonely often frustrated. The tended not to tease us or joke around like the signing adults. Mainstreaming was lonely and several told us stories of being bullied or left out. Most hated the hours of speech work. One told me a secret, she had an implant and it it gave her headaches. She no longer uses it. Many talked about not really fitting in as adults and most learned to sign after high school. Hearing parents of oral kids in general seemed guarded and stressed. they would get so excited about the smallest gains.

Then there was the group who started out oral and later were sent to state schools because the "failed" in oral education. We heard many heart breaking stories most ended in joy upon arriving at the deaf school. we didn't meet these parents until he was 4 1/2 and well on our way.

The moment it all came together for me was when I picked up a copy of the "Mask Of Benevolence" by Harlan Lane. All of the vague feelings I had were suddenly very concrete.

Maybe we are selfish our decision was based on what would be the most joyful. So really we didn't want his memories of childhood to be bleak and feeling like he owed us something. We didn't want him to be bored at dinner or family celebrations. I wanted him to be able to tell me about his first crush and first heartbreak.I didn't want him to remember me as the person who sacrificed to fix him. We didn't want his life to be that of a life long patient when he didn't have a disease. We wanted him to feel he could be the one to help not the one who depended on help. We didn't want him to feel disabled. We wanted him to have academic success. I could go on and on but this all leads to language. There are so many languages in the world and none of them scare me but for some reason ASL is often feared.

Again this is just what I was feeling while trying to navigate. This is how I remember it and there is more to tell later.I could be right or wrong but I own my feelings.


I would not change a thing about him.
(well maybe the clean the room thing...)

Friday, October 9, 2009

So there Was a Priest, A Rabbi, and A Deaf Guy....

It is my opinion if you are comfortable in your skin you can laugh at yourself and situations you find yourself in. Over the years my family has found humour in many of our characteristics. My son love to poke fun at me for being a Waldorf teacher. If I were uncertain of my abilities or didn't believe I was a good teacher I might resent his teasing but I know he respects me so I laugh along because his teasing is so funny.

When he was small I always laughed when well meaning people would see him and whisper in the most gentle tone, "Is he hearing impaired?" Well this is funny because we don't use this term and why are we whispering? I would reply in my best outside voice, " Who? My son? Oh no he is deaf, can't hear a thing." I know that is a bit rough but the idea of tip toeing around my son is just too funny.

My son always would tease me because I hate really loud noise. "Bet you wish you were me".

One time a friend with a hearing daughter came with us to a children's interactive exhibit at the art museum. As we walked across the lawn to the door we heard what seemed to us to be children singing over a loud speaker. It was so cute and you could hear it all around the outside of the building. Once inside we realized it was coming from a stage where the kids could host a news show. They had video and sound. The museum was really busy but our kids waited so patiently. When my son age 3 got up he did this whole routine pointing in different directions and "talking". He did a grand Vanna White gesture an introduced his friend. She walked shyly up to the mic and spoke two words. "F*#* it!" I turned to my friend " Bet you wish she was deaf right now"

My son happens to be deaf. For us that is just a state of being like hair color or my being left handed. That is just part of who we are as a family so finding humor in that is natural. Over the years we have laughed about deaf standard time.We laugh about how he sleeps through his sonic boom alarm but the rest of the family wakes up from the sound of it vibrating. We laugh about how when out in public people who assume we are all deaf will walk up smile and sign the alphabet. In short we laugh a lot.


Going mainstream has funny moments.

The other day I went to pick up my son from his ASL club meeting at a local cafe. The kids were engaged in conversation and I sat down to allow him time to wrap up. A group of kids were just cracking up. Here is the story that was causing the uproar.

The school has a theme this year that all the kids study, Cuban music. There is a class where they are expected to explore this art form and integrate it into their general studies. The first day of class the teacher presented this assignment. They were to listen to a Cuban song and after create a dance of art piece that represents how they felt about it. *dramatic pause*

My son raises his hand points to himself and says, "I'm still deaf"

The class burst unto laughter. The teacher stopped the lesson so everyone could brainstorm on how to continue. Finally they decided to try and use a small amp so he could at least feel the vibration. He walked over leaned in shaking his head, " no, still deaf ".

The kids thought he was funny they continued the joke all day. We now have a powerful silent amp that goes to any class where there is music courtesy of the principal. What is so interesting is no one at this school views my son as disabled so deaf is not a sensitive issue. They address it as a learning style. Some kids are kinetic learners, other visual etc but they all have a way they learn best. The teacher from that class was horrified at her mistake and came to my to talk about it and how she could change. The kids joke with him in a natural fashion because he presents himself with confidence. He does not hide his deafness or sit quietly if he doesn't understand. he makes people comfortable with deafness because he is so outgoing and comfortable.

Another funny thing that happens to him is the desire for people to pay him for being deaf. When we are out in public random strangers will give him candy or money. At stores and restaurants he gets discounts and things for free. This drives me nuts but he thinks it is hilarious. He makes jokes about how he could start his own church and make millions. Of course I remind him that he shouldn't encourage this from hearing people they don't know any better. I also had to explain they do this out of pity which was a huge shock. He can't wrap his head around why someone would pity him.

There is a long tradition of deaf jokes. The one about the man who goes to his car at a hotel and forgets his room. He honks the horn and finds his room because his wife is the only one who didn't turn on the light because of the racket. We even have a book of deaf jokes and have gone to see some really funny deaf comics. So you see we are not cruel or strange but just living as a deaf/hearing family.

If for some reason you feel offended or angry by what I have written that makes me sad. Feel free to lash out and get it off your chest. One thing, I am curious about that anger.......

Hows it working out for you?

Thursday, October 8, 2009

We Didn't Order This..

About 10 years ago.......

So we had been handed a menu of options to chose from that would help us become parents of a deaf child. We were told we could ask for anything.

It was like going to a diner and they hand you a giant menu with flashy pictures of all the delicious culinary delights they offer. Giant ham sandwiches with piles of cheese melted on sourdough bread, biscuits and gravy with a stack of bacon, three patty cheeseburgers and deep fried chicken. There are pages of options but you are looking for a nice healthy salad with a splash of olive oil.

You request this and are told the chef will try. An hour later a ham sandwich arrives. You send it back politely. Then a tuna salad arrives, you send it back explaining you realize it is a salad but you are allergic to tuna and asked for a green salad. You ask to speak to the chef.

The chef arrives 30 minutes later and tells you he can't open the cooler with the veggies. You ask who has the key? That would be the manager. You ask to speak to the manager and they send out the assistant who tells you he needs to research the location of the key and they have never served vegetables before.

At this point you are starving and getting grouchy. You have to maintain your cool because if you show your frustration they will kick you out and there isn't another restaurant for miles. The manager finally arrives and opens the door a crack for the chef. The lights are not working so he grabs some fruit and tosses it on a plate. This is your salad. You eat some of it and go home to just make a green salad yourself.

We thought our requests were pretty simple.

We asked for a deaf mentor. We were told they didn't have any deaf staff to fill the position and it had to be an employee of the school district. They didn't understand why we didn't just use one of our deaf friends.

We asked for the teacher who came for home visits to be deaf. Again same problem.

We asked that the home center class use ASL. They told us that the other families needed the service as provided. I asked for a new class to be set up. They would look into it. I told them my son needed and interpreter while we waited. The sent a pregnant staff member who walked in the room and said,
" I have no idea what you expect me to do and my legs are swollen"
" Interpret everything that is said so my son can see"
" He is too little to pay attention"
"That is not the issue"
She was frustrated and confused and tired from being pregnant so she needed to sit on the floor. She didn't interpret the class.

That is just a sample of some of the issues we had.


For the last 11 years we have been grateful for his education. The only thing is it was always just off. Except for a 1 1/2 years of preschool in L.A. we have always been fighting for something. The last fight was an ASL curriculum at the deaf school. They got a new Principal last year and guess what? He convinced the board that the school should go bi-bi! Too late for us but I am so happy for the kids.

This is the first school year where we can relax. More about that later I need to go watch my son's dance class at school.

Tuesday, October 6, 2009

This thing is so old fashioned GA

About 10 years ago......

I had cause to think back about technology. When we were fighting for services with the school district we had an advocate who was deaf. He was so calm and strong. One of the things he told us was that it was a great time to grow up deaf. I wasn't really sure what he meant because it felt like educators were still in the dark ages.

One area we were grateful for was technology. We had a TTY to communicate with our deaf friends. A light would flash when the phone rang so my son would know what was going on when mom or dad would run fast to get the phone. Imagine how strange it would be if he saw use engaged in an activity and then suddenly springing up tossing pillows on the couch frantically only to garb a plastic thing and start flapping our mouths into it.

Another device we found useful was the door flasher. Before we got it her would go check the front door from time to time. I guess he thought that was a magical way to summon visitors. It worked for mom and dad. They would just walk to the door, open it and a friend would appear.

Relay was helpful but it was startling to hear my 20 year old female babysitter through the voice of a 50 year old smoking operator.

Times were better but still really a lot of challenges would arise. Once we invited a deaf friend for dinner. We offered to pick her up but she declined and chose to take the bus. She got lost. She had to find a clerk at a store and get him to call for help. He had a heavy accent so the whole exchange was confusing. After a long conversation we located her and picked her up. It was 2 hours past the planned time.

All of this technology was great but we had no idea how fast it would change a few years down the road.

Today....... or the social crisis of mainstream middle school

My son has a phone. We got it last year so he could text us. He has VP, Internet with Skype. We found an attachment for his lights with a remote switch so we could let him know to come without having to invade his privacy. He no longer depends on hearing people as a conduit for communication. access

When his was little several hearing teachers told me to realize that although he was doing so well when he got older it would be very difficult for him to enter the hearing world. I was told stories of deaf kids being bullied and not doing well in mainstream schools socially. My husband and I decided direct instruction in ASL and social peers were the route to go. Nothing prepared me for the crisis we are going through now. I was so shocked I hadn't considered this might happen so I hope I am handling it well. This year he is mainstreamed full time in a public school. He is the only deaf child in the entire school ranging 6th-12th grade. Here is what happened,

Last night I went downstairs to see what he was doing on the computer. He usually likes to do research or play games. He is more of a reader though so I never worry. As I turned the corner to view the monitor this is what I saw. (If you have a heart condition you may wish to stop reading at this point.)

My son was texting on his phone, chatting on VP and having multiply chats online all at the same time..... the only deaf person involved was on the VP. The other kids were from his new school. I am sure you understand my shock. I would now have to limit his computer and texting! He has become a social butterfly and I didn't see the warning signs.

For weeks I have been finding kids phone numbers in his pockets. When I go to his school he is always late coming to meet me. Kids will hang out with me to wait for him to come out. He is always chatting to us about school and his friends. His phone goes off during dinner and worse during family time and homework!

We traded phones yesterday and while I was sitting at work with my students at lunch my phone went off. No one texts me so I was shocked to hear the loud jazz music coming from my pocket. I quickly ran to the next room to see if it was my son. No it was a number I didn't recognize. It said, "hi" I responded, "who is this?" . I went and sat down again and it started going nuts. There was a jazz concert in my pocket. Turns out it was lunch at his school and a bunch of his friends were texting him to hang out.

So we are navigating the world of pre teens and technology and have to figure out a plan fast. We will set some limits tonight but for one day we sat back and let him jump in.

The great thing about kids these days is they take ASL at school. Hayden has no problem talking with those kids that do. The other great thing is technology. They no longer sit for hours on the phone. He can join in the fun without any boundary.

Saturday, October 3, 2009

Way Off Topic

Deafness is not a disease but there are many childhood diseases out there. We are so lucky our family is healthy and happy.

We have always tried to teach our kids to live as a community with the world. We teach them to give because if we all work together the world will have a place for everyone. Tomorrow we are going to a Diabetes walk because a 6 year old friend has type 1 diabetes and we need a cure. My son asked me to use this blog to post his sister's fund raising page. Every Penney counts. If you have a desire to support our walk here is his sister's page for donations,

Here is a letter from a friend who also has a daughter with diabetes

Imagine you're 4, or 3, or even younger, and you are diagnosed with Type-1 diabetes.

You're likely too young to know what's happening to you, but onset of this disease is rarely forgiving. The two big symptoms, unquenchable thirst and uncontrollable urination, appear, growing in intensity each day as your blood starts to become more and more acidic. Your parents won't have any idea, because they'll think your wetting the bed is a *result* of the constant drinking and tell you to drink less.

The diagnosis usually occurs when blood glucose (BG) and ketone levels are so high that you present symptoms of a bad cold, or the flu, and the doctor sends you to the ER - because you are way too sick to get out of this unassisted. By this time your BG may be 500 mg/dL or higher - normal is closer to 100 - and you'll need a night or two hooked up to an insulin IV to get it back to normal. You have no choice because your body no longer makes insulin, or no longer makes enough of it to matter.

That's bad. But there's more.

You NEED insulin. Eat without it (and eating is quite important no matter your age), and you'll just end back up in the ER again, likely within a day. Insulin isn't particularly effective when inhaled or ingested. It must be released into your bloodstream, just as it would if your pancreas were working properly. That means injections. Needles. Shots. You may not yet know how to read, or ride a bike, or jump rope, but you will know all about getting poked by tiny, sharp objects. Several times a day. Without those BG checks and injections, you'll die.

Imagine that this is your new reality. That's *really* bad.

Imagine you've gotten used to that routine for several years. As much as you can, at least. But - you guessed it - there's more.

Imagine you're sick, as Caitlynn is right now. Fever, vomiting, no appetite. Your body starts making ketones again - a normal part of fighting your illness - but to remove them, you need more insulin. Since you're not eating, that extra insulin also makes you hypoglycemic. You tiptoe that thin line for as long as you can't eat or keep anything down. BG constantly swinging too high or too low; there really isn't much in-between on sick days.

Now imagine looking into your parents' eyes, hoping they'll be able to fix it as they do other things, but the look they give you back lets you know that they are just as helpless as you. Now you, the child, know that all you can do is be strong, because this is your battle and no one else can fight it.

That just sucks.

Imagine the realization that this is your life, because Type-1 diabetes has no cure. Yet.

Now, imagine a cure, and making this a story no kid ever has to know.