Friday, October 29, 2010

Deaf and Death

On October 31, 2010 I will remember my other daughter. Well, really I remember her often. She died in her sleep four years ago on Halloween morning.

So I sit here tonight thinking. I think a lot, can't help it. I sit and think how my daughter never showed me who she is past the very first  connection we have with our young children. I sit here tonight and wonder what if she had lived to show me.

I used to love Halloween because my kids could show me that part of themselves that comes out only through imagination. I would host parties to bring folks together. Then one day it stopped. One Halloween morning the world came crashing down. We were left defenseless.

A couple of days before my son was given his first "store bought " costume. It was the "Grime Reaper" . My daughter also had her first commercial attire gifted to her. I decided to let it go. I had a new baby, two jobs, volunteer classes at WSD and couldn't really design the costumes that year. My kids wanted to see what store bought stuff was about. In the past I had shunned store bought costumes. I was a costumer and my thought was a child should create the character they wished to become on that one day where they could be anything they dreamed of.

That Halloween morning I checked on my baby and she was dead. There was foam in her mouth, her body was cold. I had already sent my son to the bus for school. My husband was in the shower and my other daughter was asleep. I refused to believe it and screamed for my husband. I begged him to do CPR while I called 911. It felt like hours for them to arrive. It was only minutes I found out later.

When they did arrive it was dreadful My house was full of paramedics, firemen, police in uniforms and detectives in trench coats. I was of course feeling unbridled hysteria. I feel empathy for these first responders. Looking back they were maybe as shocked as I was, healthy babies don't just die. I remember one paramedic pretending to work on my Finley and she quietly pleading to her partner, " I don't know what to do". 

We ended up going to the deaf school to tell my son. We had decided to wait until his school day ended at the advice from the detective The campus was strangely quiet for that time of day. We walked to the counselors office to tell our son and I noticed folks peeking out as if to see if we needed help but to uncomfortable to approach. Folks just want to do the right thing but what is the right thing when a baby dies? We told him the news.  He protested thinking it was a prank. The counselor who is Deaf was able to help us frame the information. 

So on Halloween morning we joined a new club. "Victims of Sudden Tragic Death".

What happened next will always brings me chills. Our hearing friends and community were not comfortable with the thought that a baby could die for no reason. They gave us our privacy. I don't mean this in a negative way. I would have never known what to do if the tables were turned. Some did come forward to help us grieve but....

Our Deaf community was also shocked but rose up. Every day we had someone with us. Maybe a hearing or deaf friend who was a teacher or a Deaf friend, maybe a parent or interpreter.

That Halloween night our deaf friends came to our home and the dads took the kids out while the mothers gave comfort to me. I found out over the months to come that this community was strong and accepting. I couldn't stop talking about it and they sat and listened even to the graphic details. Even though food tasted like sand I ate the food brought t use from our deaf community. I am not sure I would have been able to heal without this support.

We had a private burial for family and the night before I realized I didn't have an interpreter for Haddy. I was sick with guilt and contacted the owner of SRI (local interpreting service) and explained I needed to hire someone and it might be tough because  of the situation. I know a lot of interpreters around here. The interpreter that showed up was a woman I knew and respected. She donated her time. I will always be grateful for her generous graceful soul.

My husband and I wanted a multicultural service and the school provided a venue. SRI provided the interpreters. They offered we didn't ask. The state school was our family and it felt like the right place to say good-bye.

 The superintendent officiated. The community of all different walks of life came forward to participate. We wanted to included every native language and all faiths because that was the fabric of our life. They had all been part of her joining this life and all part of her leaving. I still can't believe how much we were supported. It was beautiful. One friend presented an ASL poem about Finley. She asked the interpreters to not voice for her. I glanced over to a hearing friend while she expressed her feelings about my daughter and he was crying.

I imagine our hearing friends who showed up were nervous. On one level it is a funeral for a child. On another it was thick in Deaf culture. I am grateful they showed up. I am grateful for the unexpected support from our Deaf community at the state school. The state school has given our family an opportunity to be whole and include our son even when it is a dreadful task.

So since that day I tend to sit back and think a lot. I think about how we treat each other. How we sometimes judge even though we don't have the whole picture. I wonder how a community could rise and support when perhaps in the past individually these people were maybe not supported in the past. I will always marvel at the reaction of my other first responders.

Wednesday, October 27, 2010

Who is punching my kid?

The other day I was looking for something in my son's backpack and found a note,

"You are really good at taking a punch to the stomach"

That was all it said. I was startled. What did it mean? Was some kid punching my son? Was it some sort of awful game they were playing? I read the news I know about all the awful stuff that is happening in schools. I ran over to text my son and ask about this. I hear his phone vibrate across the room. He didn't take it with him when he left the house.

The idea that my son had been punched made me ill. I thought back to try and remember if there were any warning signs. No, not a thing. I picked up his phone to check his text history. What I found was more shocking. Several kids had congratulated him on how he took the blow. Was this a spectator sport?

By the time he came home I was sick with worry. He looked at the note and laughed. It turns out his character, Big Jule, in the musical he is in gets punched in the stomach. Apparently the cast thinks he great at stage combat. I feel like such a goof. He is not the type of kid to keep his troubles stashed away. For a couple of hours I didn't trust.

Over the past couple of years I have worked on not jumping to conclusions. Yep, still working on that. I have found if I am frustrated with my son's services or school it helps to really dig around and get the facts before I react. I also like to take both sides of the debate to get a better perspective. Deaf education is complicated but it gets much clearer if  I step back, take a deep breath and look at the big picture.

Monday, October 25, 2010

Administration ...... grrrr...Or Yea?

I have been blogging about the budget cuts at WSD. It really concerns my family because without the services we received my son would not be doing as well as he is. I have personnel experience with the benefits of this option for our deaf kids. 

Well the other day I got an email from an administrator from another state school. To be honest I was shocked. I always feel a bit of a divide between family and administration. Not in a truly negative way but in a way that doesn't foster the united front we would hope for. What I hope we can learn from this is the need to reach out will help us all.  I asked permission to quote from this email but after much thought I realized it is too important to cut up in to bits and pieces. So here is our correspondence ,

Hello there Ms. Orr,
I’ve been following your blogs regarding WSD with great interest and want to tell you I’m very impressed with your understanding of all the factors involved in the needs of those students who attend residential schools for the deaf. 

I’m an administrator at the other WSD…the Wisconsin School for the Deaf.  We’re a bilingual bicultural school and we use ASL as the primary mode of communication and instruction.  We use ASL to teach English as a second language.  The vast majority of our students require a visual language.  For whatever reason they do not acquire English, usually because of the severity of their hearing loss.  Lots of people assume that children can learn English via an interpreter or via signed English.  40 years of trying those approaches and 40 years of research have proved that English is an aural language and is learned as a native language via the auditory sense. 

In order for these children to acquire a first language they must have a visual language which ASL is.  The very idea that young children will learn English via an interpreter is silly, there are so many components of language acquisition that are missing from that model and the same is true of the idea that a teacher who  has marginal sign skills or uses signed English will teach a child either English or ASL.  Those children often come to us at the middle school or high school level and have no language foundation whatsoever.  Then we are criticized because they don’t test on grade level.

Another thing many folks don’t recognize is the fact that our teachers here at WSD take two years of bilingual training and we require new hires to pass the American Sign Language Proficiency Interview, a process that evaluates your fluency in ASL.  It’s the same process that the US State Department uses for diplomats being prepared to go overseas and use a foreign language.  Teachers in mainstream programs rarely have these skills.

Please keep up the good work, it’s rare to find a parent so knowledgeable in regard to these issues.
Alex Slappey

Hello Alex,

Thank you so much for the thoughtful email. It is so exciting to hear about a school that is willing to
provide what we have been fighting for for twelve years. I agree with everything you wrote. 

I was hoping it would be OK if I quoted you in a post. I understand if you wouldn't want to
be quoted in public but I find people are less likely to take a parents opinion seriously. 

So thanks again, you made my day.

Mel Orr

Hello Melinda,
I’d certainly be honored if you decided to quote me, I have no problem with that. 
 I’d like to add that we require a certain ASLPI level from all staff because we are an immersion program.  All direct contact staff are required to have a certain
 level of fluency while support staff such as food services and power plant need 
at least survival level skills.  Many staff do progress past the required levels.  It’s also important to note we have approximately a 50/50 split in direct contact 
hearing/deaf staff and many of the deaf staff have native fluency in ASL.  
This provides a solid language model for the children in both languages. 
 We’re not perfect of course, but we have a very solid program in those aspects.

While the factors I’ve mentioned are crucial there’s a whole lot more that goes into a good residential program, but you know that.

Take care

Let It Slide Right Under The Bar

I really enjoy reading Eh? What? Huh? . Her perspective is very honest and insightful. Her recent blog about about a student who was allowed to retake tests even though he didn't study brought up some issues I have with mainstream education. To often I feel we lower the bar for our deaf kids.

Last year when we had my son's IEP meeting it was brought up to his teachers they would need to accommodate him. It was his first year full time mainstreamed and we were all learning together. To me accommodation was things like captioned films and team interpreters for long lectures. I was thinking of things that would allow equal access to the class.

It was brought up that my son might need five extra days to turn in homework. This concept makes no sense to me. If he is at grade level and has access to the content of the class why would he need more time? What if he procrastinated on every assignment for five days after the due date? The idea of homework is to practice the skills learned in class. If the class has moved on and my son still hasn't done the homework from the last week doesn't it make sense he would fall behind?

If a child needs that sort of accommodation wouldn't it be great if they had a more appropriate environment better suited to their learning style so they wouldn't always be five days behind? At a well equipped state school that is possible.

Another situation came up in math. He would sit through class then come home and just stare at his homework. I was getting frustrated because I thought he was being lazy. His grades started to drop. The teacher suggested we erase his grades from the first half of the year and start fresh. This made no sense to me since he still needed to learn the core concepts.

Then one day he was looking at the paper due the next day and asked, "what does that mean?" it was a term that was fingerspelled and given a sign. He wasn't connecting the English to ASL. The school had offered note-takers. That doesn't work because the notes are in English and he could just use the text to get the same information. So I did some research and realized he just needed a few minutes before class to learn the signs for the concepts. This year is is doing fine in math.

At the state school all instruction is direct in ASL so this was a new issue for us. It was easy for him to master core curriculum concepts. He had one teacher, Alfred, who not only taught the subject but was able to do it with a sense of humor. He is deaf so the humor was relevant to all of the students.

When he was in elementary we mainstreamed him for a half day for a little over a year. The teachers had different standards for his behavior. He was a bit of a clown and would do things like put a fake snake in the teachers shoe. He would blurt out funny comments and goof off in class. He never got in trouble! If all the kids did that the teacher would be facing chaos but for some reason the cute deaf kid gets away with it. We ended up pulling him from mainstream until he was mature enough to navigate it.

My sister is a college professor . She told me one story of a kid who sat in the back of the class and turned in awful papers. Papers that she couldn't even read. She found out he was deaf. I asked what his services were. None. He hadn't requested any so she couldn't invade his privacy and bring it up. Turns out the kid was passed through for so many years he thought all he had to do was show up.

I also have a friend who was frustrated because her administrator at her high school told her they were passing her up because she was deaf.

I guess my point is it is really important to provide truly adequate accommodation for our kids and always hold them to the same standards as the other kids. We are not the benevolent keepers of these kids. The grow up and need to learn the tools they will use to work on a even playing field. I may be wrong but I wouldn't hire the kid from my sisters class just because he was deaf.

Saturday, October 23, 2010

Don't take my word for it

I am a bit of a sceptic when it comes to research and test results when I  think about deaf children. The thing that gets me is deaf children have complicated factors involved. I am more inclined to look at brain research in regards to typical development of all children.

For someone to research outcomes of deaf children they need to find kids to track. Well deaf is low incidence. Deaf can be a variety of things and families impact outcomes. Schools impact outcomes. There are also deaf kids who have other things going on developmentally which effect their progress.

I often question the motives of the researcher and wonder who funded the project. I am curious about how scientific the study is. We all know there is a way to frame anything to suit our opinions.

To gather accurate data I would think a researcher would need families to follow a controlled protocol while raising their child. That of course is just a thought I have. Families are so different. Some are big and some small. Birth order and finances can affect a family. The only thing I manage to control is my weight because I don't have much time to eat.

When it came time for our family to make some choices we read about brain development. Natural language acquisition seems to be a key factor. We decided on what tools we would need to facilitate that. We considered the unique characteristics of our son's hearing lose. We stepped outside of the deaf issue and thought about the big picture of what makes a human happy on this planet.

If my son had a mild hearing lose partnered with a learning disability our choice would have most likely been different. The world might still see him as deaf but he would be a totally different child.

If he had the same lose but showed an aptitude for speech we would have recognized this and acted.

When all is said and done my son has always met or exceeded benchmarks. He passes his state tests and reads way above grade level. I don't intend to research him but I can tell you some factors involved in this outcome.

1. Naturally acquired language which includes incidental information

 That is the kind of information some kids miss out on like, "Where did I put my keys?" or    "Oh crap the Johnsons are wanting to go to dinner Friday and I can't stand Fred he never shuts up"

This involves our family, my daughter included, choosing ASL as a home language. That allows for natural relationships not hindered by the stress of speech production for my son.

2. Exposure to real life situations guided by folks who have been there and done that

We had deaf mentors teach us how to navigate everyday life. It my sound funny but I wondered how a deaf person ordered from a restaurant. My son was only ten months old and that was a question I had. I also needed guidance on school environments and social development. That is where the mentor stepped in and gave us some practical insight and demystified topics we were concerned about.

We also guided our son to be independent and figure stuff out on his own. If he wanted to buy an apple I handed him a dollar.

3. Educated advocates

 It helps to have someone who can untangle the jargon of IDEA and 504. Folks like this can also support you at meetings. There has been a history of folks not taking a parent seriously in our world. I contacted Harlan Lane and asked for names. I find if I read a book and agree with the author they are more than happy to help.

4. Critical mass

Find your tribe. There are people out there doing the same thing, find them. There are other kids and adults to connect to. I really does take a village.

5. Raise that damn bar

Too often I see folks accepting the statistics. I was told many things to expect and to be honest it was all crap.

Expect that your child will do well and demand their teacher does the same (in a nice way of course).

6. My child is not better than yours

Don't compare your child to others. Perfect is kinda creepy to me.

We do look at what a typical child should be doing at every age but do not worry about if he is doing what another deaf kid is doing. We expect he can do anything he sets his mind to an if it doesn't work out we move on.

I don't feel pressure if another child can recite the constitution or read seven books in 3.4 minutes. The world is a big place and there is room for all of us.

7. Do the work

 For us that meant not only learning how to sign but using it. I know it is awkward to try and voice off at dinner when you are still learning but if you don't use it you loose it. Often I see parents in my class work really hard for an hour with me then confess the next week they didn't have time to use it at home. Being willing to get frustrated and make mistakes helped us grow.

The more you expose yourself to fluent signers the better you get. I remember being so nervous to go to a birthday party for a deaf one year old. My son was 14 months old.  A friend invited us and we didn't know anyone. Everyone at the party was deaf or CODA.

At first we just sat against a wall watching. We couldn't understand anything people were signing around us. Part of me wanted to run. We didn't fit in.  Then after a few minutes people came over an introduced themselves. They signed slowly, patiently. Soon we were learning about their lives. It turns out deaf adults wanted to help us.

8. Get the right education fit

I ask teachers where they were educated to get an idea of their philosophy. I stay connected and monitor my son's progress. Volunteering is a great way to establish a team feeling rather than an adversarial feeling. 

My final thought is if I would have put to much emphasis on research and test results I might have let my son be cornered by statistics. We are not perfect, he does face challenges but so does my hearing daughter. I did do a lot of research and comparisons. I read the research and dug deep to find out how it was done and the motives behind it. My son is a minority within a minority. I tried to see how the research related to my son and our family. He is so deaf the only sound he experiences is through  vibration. So I remember back when my son was three several Deaf people told me he would be fine. They were not worried about him even though I worried every day. Turns out they were right. I can't predict the future but at least his outcome will be on his terms.

Thursday, October 21, 2010

Here Are My Shoes

Here are my shoes. Now put them on and let's go for a little walk.

My son was born deaf. We couldn't get the doctor to listen to our concerns until he was 8 1/2 months old. Now children get tested at birth. I am grateful.

For the first three years we worked to get access to ASL as a native language for our son. We had to work really hard but were faced with many walls.  Now ASL is taught as a second language option at many schools and parents of hearing kids see the benefits. I am grateful.

At age three he entered a bilingual/bicultural preschool. His class was the first class to go through this program. He flourished and we expected his education to only get better. To quote his IFSP advocate, Larry Fleisher, "It is a good time to be deaf." A couple of years ago we visited his old school. Seeing how great his old classmates were doing made me grateful.

We moved and he entered the state school in Washington. They did not have a bi/bi program. I asked for it and offered up his old program as a resource. I was told no, they can't, the parents would freak out. The year after my son mainstreamed at age 11 they switched to a bi/bi program and consulted his old program. To late for Haddy but I am grateful.

I found out about a curriculum that taught deaf kids English. I brought it to the school. No response just vague reasons why they didn't try it. A few years later they discovered it on their own. I am grateful.

I asked for an ASL policy at the school and the board told me again no because the parents would freak out. I asked for the teachers and staff to be tested for proficiency and again was told no because of teachers unions. Now the school takes the language used for instruction seriously and I am grateful.

When my hearing daughter was nearing the age of three I asked the school to allow CODAS and siblings into the preschool. No I am told because of some legal reason regarding state funds and audiograms. This year the school admitted CODAS and siblings. It is too late for my family but  I am grateful.

The state school we left is now on a path that will best serve the children. I am grateful.

For years I have known my son would benefit from going a separate path from the common well worn road. A parent is the expert of their child.  I find often our way is to off the radar for most people but slowly I see others understanding us and for that I am grateful.

Now we are entering the world of mainstream education. Again I am offering my opinions and people look at me with that "you are a mom look" and I hope looking back we will be grateful.

You can take off my shoes now, I can see your feet are a wee bit sore.

Wednesday, October 20, 2010

A Place For State Schools

I recently read a comment on my blog supporting the closure of state schools for the deaf.

"Anonymous said...
I think the budget cuts are a gift that will allow us to make overdue changes in Deaf Schools. They say that you need a sense of urgency to create change and the budget cuts put pressure on and create that sense of urgency. I would advocate for closure of WSD and other schools for the deaf and a push toward integration of deaf children in the life of our public schools. Deaf schools are not the only places where competent signers are also caring teachers -- those individuals work in public and private schools for children at large. Public education is a fundamental issue of democracy and deaf children deserve it and have a right to it."

In theory this so great. If rural public schools had the qualified staff and critical mass to meet the needs of all deaf children it would make life much easier for families. If public schools in larger towns had the qualified interpreters and critical mass to support it's deaf students this would be ideal. It is my opinion directing children back to their local districts is not the answer.

So the topics I want to explore are qualified personnel and critical mass.

I was talking with a high school student and her mother last week. They expressed how it was hard to send her to the state school all week only to spend time together on the weekends. I asked why they didn't mainstream. I was told the interpreter she would get wasn't qualified.

The problem many rural and small towns have is even if they desire to educate deaf child who communicate with ASL they don't have the resources. You can't force interpreters to move to these locations. Children at the state school get direct instruction in ASL so there understanding of core content is clear. There is also access to a pool of interpreters for events outside of school because it is a hub of deaf culture.

Critical mass also plays a role. If there is one deaf child in the district it makes no sense to hire teachers with deaf education backgrounds. So it is left to the district teacher to figure it out maybe with support from an itinerant?

 I believe their are some children who would never meet another deaf person which could effect self esteem and social development. In an area with a concentration of signing   adults the parents are also supported by community.

My son mainstreamed for half days in elementary for 1 1/2 years. It didn't work socially because the district doesn't teach foreign language (ASL) until middle school. He now does fine because his hearing peers can communicate with him. We live close to the deaf school so we have access to qualified district employees and interpreters that can support his school.

Deaf children have the right to a free and appropriate education . They are also deserve the right to the least restrictive natural environment.

So those are just a few thoughts off the top of my head. I would welcome any opinions on this topic.

Did You Really Just Say That?

I saw a post on Eh? What? Huh? that got me to thinking about some recent conversations and how I react.

The first took place at a church where I teach. I am not a member of the church I just use the space for my class. The church is kind enough to not charge me. A woman from the church sat in on my class last week. She was friendly warm. She reminded me of the typical grandma stereotype.

After class she mingled with the parents who take my class. She mentioned her daughter  "does the sign *she hesitates* SL. She interprets for gospel signers"

"You daughter interprets? Musical interpreting always impresses me. ASL is a beautiful language." I reply.

"Yea, she went to college for it. You know those deaf people are really paranoid. They always think you are talking about them."

A mom jumps in to try and redirect, "That is your experience?"

"It is true, they are all really paranoid........" she continues and I walk away before I hear one more word.

Everyone except this woman is fidgeting with their kids trying to exit. I was hoping I wouldn't have to step in a make a scene. Some might feel I should scold and embarrass this jerk. I really want to meet this daughter who filled her mom's head with crazy misinformation.  I will wait and when she visits again I will incorporate some deaf culture into the lesson. I will use it as a teachable moment. I still can't believe she said that. I sort of feel sorry for her.

The other thing that happened was a met a really cool woman waiting for her granddaughter at my son's school. It came up that my son was deaf. She  looked shocked.

"How can he go to school here?"

I explain.

"Oh that is so wonderful! I want to meet your son."

She was really excited that the school had a deaf kid. She knows nothing about deaf kids but the concept was cool too her. He came walking up and introduced himself. He added  a "nice to meet you". I voiced for him.

"Did he just say that? Wow, that is so wonderful."

So this woman was very cool. She had never met a deaf person and was learning. She was open to the idea that he was just a kid. I did not sense a shred of judgement.

So two women the same age in the same week have opinions  about the same topic. Two entirely different opinions.

Friday, October 15, 2010

A Teacher At WSD Changed My Son's Life

I have been writing about the budget cuts at WSD. There are so many reasons I am concerned about this. We have moved on to another school but I believe it is the responsibility of all parents to support other families. There are families who will not be receiving the rich resources we had access too. So today I am going to talk about one teacher. My son was surrounded by highly qualified educators at his time at WSD this is just an example of how the school helps the kids access their right to education.

When my son was in preschool I found out there was going to be a new teacher. I was concerned that this new teacher would not be fluent in ASL. I was hoping for a qualified Deaf teacher. She was hearing. I wondered if she would hold to kids to the high standard they deserved. I was worried she would talk in front of them to other adults. To be honest I wasn't happy.

At registration while others went from station to station figuring out lunch fees and bus schedules I tracked down the new teacher. I wanted to meet her and make sure she understood what I expected (in a friendly fashion of course). Looking back I was a bit of a jerk. I walked into her room and saw she had taken the time to paint the entire room and sew pillows for a reading corner. It was simply preschool heaven. I pushed that aside because my son doesn't need to meet Martha Stewart he needs a solid education.

I basically aired all of my opinions and told her one concern I had was the kids had no real exposure to the world at large. The planet as a living changing diverse community was not explored at school. I told her my concern is the children can't learn empathy and tolerance if they don't explore the lives of others. I also ranted about the lack of integrated ciriculum.

What followed humbled me. She had  developed an ABC ciriclulum. Every letter coresponded to a country. A was Afghanistan. They children conected this country to every subject. Math I saw cooking, English was in research and report, social studies was the day the kids had to wear burkas . She built a book for each kid to bring home. We still have this book in our living room.

At one presentation she decided the kids needed manners and brought in her family china. The tea party was an event to remember. The kids presented and showed their parents manners and their presentations on other topics . One child broke a cup. The parents were  in frozen fear.

" No worries that is how we learn" and she meant it.

That first year I got to know this teacher I began to have the highest respect for her. She got it. My son excelled. She also attacked core curriculum with a vengeance. She expected every child to rise to the occasion and they did.

This teacher has invested many out of school hours for the children she works with. Today I had the honor of paying back a bit. I sat and volunteered at the deaf school. I sat with her . She created a auction for this sinking ship. Cheers my friend.

 Haddy had rehearsal and missed tonight, but I am grateful.

He really wanted to see a staff person, Lisa. She made him feel normal for so many years. He would tell me her stories and connect the dots. I know in my heart she knows he adores her.

 I will always support this place we came from. This school with all of it's warts and bruises is a place of saving.

Thursday, October 14, 2010

I Need Some Information About Interpreting

So anyone out there ever have experience with interpreters in a mainstream setting? Any mainstream interpreters? I have some specific questions and would appreciate some opinions. I disagree with someone and am trying to understand their perspective.

How many interpreters did the student have? If more than one on an alternating schedule why? If only one full time again why?

What are the pros and cons of a student having two interpreters alternating two weeks on, two weeks off) every two weeks?

Thanks for taking the time to comment

Wednesday, October 13, 2010

Thats How We roll

Today I am thinking about driving. I am reflecting about what features are important to me when choosing a car. I tend to think of the oddest things. Currently I have two cars at my disposal a Honda accord and an Ifiniti.

When choosing a car to drive I consider my son. I prefer the Honda he prefers the Infiniti.

The Infiniti has big heated leather seats. At last count it has a million cup holders. It has a fancy stereo and a luxury interior. He likes that.

The Honda does not.

The Honda has low seat backs so we can all see each other sign. It has a mirror system that allows me to look back and see the conversation.

The Infiniti does not.

Tuesday, October 12, 2010

WSD- Another Mom's Opinion

I saw this comment on my post about the budget cuts at WSD and found it to be really interesting. Please know I am just sharing a stockholder's opinion.
Anonymous said...

WOW! So many thoughts. First let me start by saying, WSD has had budget issues long before Jane Muhollnad showed up. She has been a tremendous blessing to that school on many levels. I, as a parent, am grateful she is there.
Now on to "T.G." All politics aside, Do you know how many children attend WSD? How many children benefit from the education they provide? Not every student at WSD does as well as Mels son. Many of them struggle socially and academically. Did you know that many come to WSD that way. Do you know why? Because no matter how hard their parents advocate for them their local early intervention was not enough, or their local mainstream public school failed them. I know many teachers try to help and do all they can. But a deaf student in a class of 25+ is going to be somewhat overlooked. Deaf children, as well as hearing children, need a strong language foundation to be educated. ASL or English, it doesn't matter. Most deaf will not get that in a public school setting.
We CHOSE to raise our child DEAF. She uses sign language for communication, as do we. When she was three months old, WSD took us in. They taught us sign language. They introduced us to other deaf families. They taught us how to teach our child. How to help her become aware of the world around her. Most importantly, how to advocate for her. She is educated. She too meets the states guidelines for academics. She is very smart, and she thrives in a deaf school setting. Without the support of WSD and their staff, we would have had no early intervention for our daughter. I would not be able to communicate with her on a "relationship" level. She can tell me all about her day. Her wants, needs, likes and dislikes. We can read together and we can talk about tomorrow. We share a language.
You are putting a price on the relationship families have with their children and on their education.
You said that Mels son would be "better off in a mainstream setting where he can be challenged intellectually". But I ask, how do you challenge someone with whom you can not communicate. Someone you can not relate to.

The only thing these budget cuts say to me is that one child's education is more important than another. Their education should be protected.

-Hearing Mom

Sunday, October 10, 2010

Charlie Chaplin Saves Halloween

Every year as Halloween approaches I reflect on Charlie Chaplin. I know you are thinking I am crazy but Charlie Chaplin was a key figure in my son's early years.

My son was born almost thirteen years ago. We bought this little machine that attached to the TV to give him captions. Our trusty TTY sat in the corner of the living-room. A light flashed when the phone would ring. I bought an Ibook to do research and advocate for Haddy through email. I wanted orange but ended up with blue since everyone before me also wanted orange. We were hyper vigilant wanting to make sure we did every thing right to insure his self esteem would survive the first few years.

This is where Mr. Chaplin enters the picture. My son was not yet reading at the age of two and the movies available with ASL were limited. We got some Chaplin films and he was hooked. "The gold Rush" is still a favorite with him.

*At this point I will pause to assure parents we watched all of the films first to determine which parts were appropriate*

Soon my kid was playing at being Chaplin. He would swing a stick and hobble along. He could recreate the most subtle facial mannerisms. Instead of Mickey Mouse posters he wanted old Chaplin film posters.

Right before his third birthday a few weeks before Halloween I asked him what he wanted to be.


That was our home sign for Chaplin. The designer and tailors on the TV show I worked on LOVED Haddy so they recreated a Chaplin costume to exact measurements. The trend at the time for costumes was" Toy Story" and some other commercial characters.

* At this point I pause to explain I do not pass judgement on Buzz I am just trying to show how my deaf kid chose a different path. I do not look down on the little Buzz friends who populated the streets back then. *

On Halloween night we set off with a pack of hearing friends. I didn't want to have to tell every house he was deaf and interpret his trick -or -treat and thank you. I was hoping he could just fit in and enjoy the night.

Haddy had it all figured out. He would go the the door in character, silent. He would do his Chaplin moves as he got his candy. Not one person had an issue. At one house an older woman answered and asked each child what the were dressed as. She didn't know the characters that populated current media but offered up a smile. She got to Haddy and said,

"Charlie, Charlie Chaplin. Harry! Come here Charlie Chaplin is at the door!"

Her husband came to the door and a smile filled his face. Haddy then proceeded to delight them with a quick Chaplin impression. They took a picture with him. That is a magical memory for me. My deaf kid brightened their evening and found a way to live on equal terms.

Last year I posted about this topic but in regards to our entry to deaf culture

So this year he is thinking about being a sculpture......

Saturday, October 9, 2010

From Deaf School To Mainstream

I thought about the transition my son is going through moving from a deaf school to a mainstream school. He was in a voice off program from age 3 until he entered 6th grade at age 11. I have to admit I was nervous for him. I am a mom and I worried he would be lonely or his interpreter would suck. I worried he would fall behind because he didn't have direct instruction. I worried the teachers wouldn't be on board. I worried that because he was the only deaf kid he would be treated differently. Some of this happened but for the most part it was an amazing transition. Here are some things that I noticed.

Somehow the kids all knew he was coming. The first few weeks were funny because random kids would swarm him all day in the halls and at lunch. They were eager to try and sign with him. He was exotic like a foreign exchange student. This was a shock to me. I thought like a lot hearing people the kids would be frightened to try and communicate with him I had heard so many stories of bullies. It was also a bit overwhelming for him. He was trying to get oriented and the attention was a little overwhelming. None of this was a big deal. He decided a couple of weeks in to face this head on. He made a sign that said "Free Hugs" and walked the halls with it to everyone delight.

There was the issue of music. The school is an arts magnet so there is music everywhere even in core academic classes. One teacher forget about Haddy being deaf and didn't plan for a music based lesson.
Teacher, " Listen to the song and create.."
Haddy, " I am still deaf"
The teacher scrambles around looking for a solution. She is determined to involve him. She finds a small speaker and hands it to Haddy. He leans in as if to listen and says,
"Still deaf"
The tension is broken and the class erupts in laughter.

One thing that he needed to learn is how to socialize with hearing kids. The deaf school culture was different. They tease in a different way and have different slang. I love watching him develop this skill. The kids at the art school are his tribe and his has a lot of friends who get him up to speed.

Getting the interpreter worked out is a pain and I know we are not alone on this. He is really active after school so last minute arrangements are sometimes sticky.

Some of the movies they watch are too old for captions, that sucks. His interpreter had to interpret an 1 1/2 hour movie on stage alone. The school is trying to learn though , it just takes time to iron out the wrinkles.

So the is just a wee bit of the transition issues. I can't believe I was so worried. He is in heaven in the mainstream school. I still would send him to the deaf school first. I really think it helped him academically and emotionally. If I could go back a change something I think I wouldn't worry so much.

WSD is in crisis

Today I write with a heavy heart. The state school my son attended through the fifth grade is being slammed with major budget cuts. It has been going on for awhile but now they are cutting critical programs and firing staff. A friend who has worked there for 27 years was let go. They have already cut the fat now it is time to start chipping away at the bones.

I am told that because it is a state agency there is no federal protection money that other schools get. I don't know much about that but I do know my son's mainstream school is managing to maintain even in this economic crisis. I also know he wouldn't be in that amazing program if it weren't for the staff and programs offered at the state school.

I am told that the birth to three program will be cut. Early intervention provided by qualified professionals is critical the successful outcome of our kids. My son would not be testing above grade level if we did not have a strong foundation with the help of these services.

Some would argue the school needs to shut down. I strongly disagree. The kids at this school benefit from the critical mass necessary to educate them in a least restrictive, natural environment. Social and emotional growth is fostered with deaf adult role models. In some cases the families don't sign so this is a place for them to learn about the world.

If it were possible I would think it would be cool to have the state recognize cutting the already meager budget is counter productive. It is painful to see the school struggle to make the cuts without effecting the kids.

I was thinking maybe the school district could take over the school and the state could continue to cover the cottages and outreach services. The school could become a charter school with guidelines set is place to insure the bi/bi program could continue. Just a thought.

Thursday, October 7, 2010

Audiogram- Holy Grail

So my recent posts have stirred the pot a bit. I feel I need to clear up a few points based on some of the comments I am getting. I think the organization hosting the competition is awesome. I feel like some folks see me as ungrateful. Maybe you think I am the type of person to kick a patron saint. This is not the case. I think many deaf kids have benefited from this contest. I just am perplexed by the requirement of a current audiogram. I agree that proof is a good thing to avoid problems.

First, my son is not a typical deaf kid. Most of the deaf kids we meet are seeking some sort of medical intervention related to their hearing. My son is not. He was born with a profound hearing lose. At the age of 18 months it was suggested he try a CI. After doing some research we decided against it. We decided to raise him bi/bi. He had several audiograms in the first few years. They were all pretty much the same. We were told with aids he might be able to hear a fire engine.

Over the years we have not been advised to have more audiograms. Not one professional educator or medical professional has suggested this. My son did request one in elementary school he is now almost thirteen. Every instance where one was requested the last one has been used with no problem.

We also researched the IFSP and IEP. WE found deaf kids were being tested for social and emotional problems before there was any indication of an issue. Psychological evaluations were involved in the process. I noticed that deaf kids were more likely to be labeled with behavior problem. We decided since he had a natural native first language and no sign of any other issue to refuse these tests. There was no need to set him up for a label.

We feel that there is no need to treat his deafness as a medical issue because we are not seeking any medical intervention. Maybe we are making a big mistake but we are willing to take that chance. So far he is doing great and testing academically above typical deaf children. Socially and emotionally he seems to be doing just fine.

So back to the contest. The rules assume all deaf kids would naturally have a current audiogram. My son has participated in deaf contests and camps before. They always accept his old one with no question. He is also in a public school which could easily verify he is still deaf. He also attended the state deaf school up until 6th grade. They would be happy to verify he is in fact really deaf. The deaf school mandates an audiogram for admission. So I have a well rounded , confident clever Deaf kid. What I don't have is a deaf kid with a current audiogram.

So my point is, it is easy for kids with more hearing to enter the contest. He is too deaf to use the phone or learn to talk but he has to go pay for a test to prove he is deaf. Ironic? Well we just think it is funny. It also gives us an opportunity to question.

I was told to "deal with it!" . The idea that I don't "deal with it" is again funny. I "deal" with "it". So does my son. He doesn't try and pass as hearing. He is a teacher by default every day of his life. He does however question. Some times we find people are so used to doing things one way and it isn't a way that benefits the deaf child. If I just deal with it every time we are presented with something we don't agree with how does that benefit my son?

Here is an example. I am now dealing with an interpreter schedule issue. He has two qualified interpreters working two week shifts. The problem comes when the transition happens. There is a catch up time because the language at the school is unique. It is an art school, The district wants to keep it the way it is because their stance in the past has been kids get too dependent if they have one. This does not apply to my son who is almost too independent. So would you suggest I just accept this while my son's education suffers and there is an easy fix? Maybe because that is just the way it is done? The contest issue is funny this issue is not.

Someone suggested I should allow him to decide. I did. I don't decide for my son what he does I just advocate until he is old enough to do it himself. I was surprised to hear from his principal he signed up for morning announcement auditions. The announcement is broadcast over a PA system with no video. My kid has balls and navigates his life pretty well without me deciding for him.

My son thought this contest would be fun. The hassle of getting an updated audiogram just for this has taken the fun out of it.

Wednesday, October 6, 2010

I Made A Mistake

Follow up on my last post,

So my son can't enter the Optimist club deaf contest because he doesn't have an audiogram proving he is deaf. I got to thinking.....

Why would he enter a contest only for deaf kids? Instead he should enter the same contest they offer for all kids.

Essay Contest
Topic: "How My Education is the Key to a Successful Future"

The Essay Contest is for students under 19 years of age as of December 31, 2010, who attend school in the United States, Canada or the Caribbean. Students residing on U.S. military bases overseas are eligible to enter using their last U.S. home of record. All Club contests are held by early February 2011. Club contest winners progress to the District level.
    Club prize:
    District prize:
      Plaque and a $2,500 college scholarship
For an application and complete contest rules, please click here.

Oratorical Contest
Topic: "If I Were Leader of the Free World, the First Issue I Would Address Would be ... "

The Oratorical Contest is for young people under the age of 19 as of December 31, 2010, who are educated in the United States, Canada or the Caribbean. Contest entry ends by late March 2011. Each applicant is required to give a 4- to 5-minute speech. Winners progress to the next level.

What was I thinking? I always tell him he can do anything he wants, why would I encourage him to enter the deaf contest when there is the same contest for all kids?

Tuesday, October 5, 2010

My Son Is Too Deaf For A Deaf Contest

This is so funny. My son found out about a communication contest the Optimist club is offering. There is a college scholarship award, cool. The only problem is the rules to enter.

Communication Contest for the Deaf and Hard of Hearing
Topic: "If I Were Leader of the Free World, the First Issue I Would Address Would be ... "

The Communication Contest for the Deaf and Hard of Hearing is for young people up to and including grade 12 in the United States and Canada, to CEGEP in Quebec and grade 13 in the Caribbean, who are identified by a qualified audiologist as deaf or hard of hearing. Students interested in participating in the contest must submit an audiogram completed within 24 months of the date of the contest by a qualified audiologist. Students must have a hearing loss of 40 decibels or more to be eligible to compete. Students may use sign language, oral presentation or a combination of both. Contests run at various times in each state/province but conclude by late May.

Well my son is REALLY deaf. The kid can't hear a thing, never has. Why would I keep testing his hearing? We don't have a recent audiogram and I am laughing thinking about how he has to medically prove he qualifies. I contacted the Optimists asking if his school district could verify he is deaf. Really thay are reliable, why would they spend money on his qualified interpreters if he was just kidding about being deaf? This is the reply I get,


International CCDHH rules state that contestants must submit an audiogram conducted within 24 months of the date of the contest. Audiograms dated past the 24 month period or verification from the school district cannot be accepted to fulfill this requirement."

So this gets me to thinking. If they can't see that a Deaf kid wouldn't want to be marched into a audiologist's office only to get the "I'm so sorry he is really deaf look" then how will they handle the competition? Will they get second year ASL students to interpret? Will they marvel at the clear speaking voices of the CI kids while feeling sorry for my son that he can't talk?

I know they mean well but serious? An audiogram for an essay contest? We wouldn't want a CODA sneaking in passing as deaf.

"If I Were Leader of the Free World, the First Issue I Would Address Would be ... educating well meaning hearing people before they offer to help "

Sunday, October 3, 2010

More Random deaf

I posted about how often you run into people who sign in the most random environments.

Today also supports this.

Today we went to the Junior Diabetes Research Foundation walk. We raised money to help support this cause and met with 6000 people to walk then play at an amusement park. Last year Haddy was the only deaf person we saw. This year was much different.

We saw a whole team of deaf people. We saw three interpreter friends on another team. We saw some deaf friends on yet another team and met some of their deaf friends. It was so great to see so many deaf people at a cause that has no connection to deafness. Deaf people out supporting another issue. Deaf people everywhere we looked.

My son brought a hearing friend from school and they ran around all day going on rides, playing games and then roller skating. We kept tabs on each other by texting. I never thought I would say this but I love technology even if it means giving my 12 year old a phone.

I get a text, "come now"

Then I see him walking towards me holding his arm. He fell down skating. I had a friend close by who work on an ambulance. He said it was fine but we sent them to first aide for ice. The two boys walked in the office to ask for ice and a woman who was just visiting her friend, the nurse, tells them she is a medical interpreter! How weird is that?!? So my son had the service of a qualified interpreter in a medical situation by chance. Random.