Tuesday, December 28, 2010
Today while shopping my son came a cross something he wanted to buy. The vender was very friendly and helpful. Haddy handed him a $10 bill which was the price of the item. The man said,
" I'm going to give it to him for $8" he then handed my son $2.
"My cousin is deaf" he tells me.
All my son's short life this has happened. He won a skateboard once after the guy who took his entry form told me he was going to let him win. He always gets free food from restaurants, random gifts from strangers in public and various odd free stuff. Service clubs have special events for the blind and deaf which is lovely but.....
I am grateful for the generous nature of folks but sometimes I wish people would just treat him like other kids. He does not need any "help" he is not diagnosed with a disease. Every time something like this happens he just looks at me awkward, not really sure about what is happening. I have always taught him that he is just a kid who happens to be deaf.
I have the same feeling about school. Please don't pass a deaf child because they have a challenge.
I really don't mean to sound ungrateful. He doesn't get bullied or ignored by the world. I just happen to be a helicopter mom in search of a perfect world.
Wednesday, December 22, 2010
Life has been really busy around my house. I get crazy every year around this time filling orders for Christmas. I was working away yesterday when I got a text from my son.
"Are you OK???? We just had a tornado alert!"
Me: "Tonado????" (yes I spelled it wrong, I have a smart phone that is hard to text on, my phone makes me look stupid.)
Son: " Yes! It is really bad in Portland and heading towards Vancouver. You need to let the dogs in!"
At this point I think my son is teasing me. I head off to the computer to check the weather. Meanwhile I hear thunder and rain pelting the house. Just as I find a weather report my mom starts calling. She has dementia so this is a common occurrence, real common, like once every hour. This phone rings and rings so I finally pick it up.
"Melinda, oh hi, I was on my way to the beach and a tornado hit the coast so we turned around. Are you safe?" (yea, I am safe but I need to get back to my orders if anyone wants to buy food this week)
So how did my son get my loopy mother in on the joke? I assure her all is well. She is in a care facility so I know she didn't venture off to the beach. I check the weather report and see a tornado did in fact land about 40 miles south of us. So according to the local news we are not having a tornado warning but a flood warning. I text my son,
Me: "They canceled the warning, there is a flood warning"
Son: "Oh, well my school is in lock down and all the kids are in the cafeteria" ( lock down happens when there is a safety threat, the cafeteria is in the basement)
Me: "Well, don't worry and enjoy the drama"
After school I get the the whole story. My daughter tells me they had lock down at their school because of a "big storm". End of story.
My son tells me a much more dramatic version. Some kids were outside playing and they saw a huge wall of a storm headed their way. They panic and run into the school. One is crying. (remember this is an arts magnet school, the kid was probably a theater student) My son was goofing off with a friend in theater class. (We will address the behavior issue at a later date) His friend stops goofing and looks concerned like she is thinking about a grave issue. (my son is deaf and goofing off so he has no auditory cues or information from his interpreter) The friend then tells him there is a tornado warning. He thinks she is kidding so he tells her there is an alien warning. Then another kid runs up and tells him the same thing. The kids are then herded into the cafeteria. He tells me the kids are all "freaking out".
So Haddy is shuffled off to the cafeteria. I learn about how some kids were praying, some were writing Wills for their families. I watch him as he giggles and relives the drama. I learn that when he saw my text about the flood warning he announced it and "forgot " to mention that there was no tornado warning. He tells the kids he wishes he had a surf board while they freak out because they are in the basement. Haddy is always joking. I learn that maybe my kid might be the calm one in an emergency. I also learn that somehow he can extract specific information, really specific stuff, even when folks are "freaked out". I also learn he has entered the realm of fearless teenager. So the end of the story?
"Mom, art schoolers are so dramatic, the funny thing is they haven't really had to deal with anything"
Saturday, December 18, 2010
As he grew he out paced his peers which brought on the dilemma of what to do with him. He didn't fit in with his own culture. The other kids didn't go home to a family that signed. The other families didn't do what we do. We are a needle in a hay stack.
He is now at a charter art school. It is a huge deal that he got in. He scored 90% on his state reading test last year...... whoopee. By the way I hate those tests. The thing that kills me is he is Deaf.
So every day he goes to school. He puts up with so much crap just to get information. I get so frustrated but he just moves on. Yes, he has friends but they use a text screen and home signs to communicate. Maybe some folks think that is character building but I know as a child I was able to have open free conversations.. one third of his new education involves music. Did I mention he is really deaf?
Tonight he tells me he misses deaf culture. I have two reactions. One is relief. One is sadness. I am relieved he still has roots with the deaf community. He will always find it. Maybe I am relieved because we invested everything in that. I am sad because he doesn't have the access he once did.
My kid is much smarter than me. He tells me he just needs a week. He just needs to see his old friends. He tells me he loves his new school because he is an artist. His plan is to make a documentary. He will tell the world what it is like to be deaf. He wants to make a film about the world of being a deaf kid from all angles. He is planning this so he can go to WSD and see his friends. He is also planning this to teach hearing people that deaf people have a different way of socializing, communicating and being..
So he tells me he will ask for the support of his two favorite teachers. He tells me that a friend in college already volunteered to direct.
So it is 4 am and I am done writing this post. If you are a mom you understand why I am awake.
Tuesday, December 7, 2010
Well lets not get too comfortable. My mother has dementia.
Mom is sick.. the hours spent serving a deaf son are now spent serving a ......... very sick person. The bean bags we chucked past Haddy don't matter here.
The other day he jumped out of my car mad, I wanted to chuck the brush at him, I didn't because we are still connected at the hip.
So the new topic is,
How do you get your Deaf kids attention? I have an entire list ....
Saturday, November 20, 2010
Down on the floor below the stage sitting in chairs. They must just be resting up for the show I thought. They were on a four inch platform which could not be seen from the reserved seats. Just in case I walked over and asked where they would be working during the show? Here they tell me. CRAP! I run over to a staff person and tell them the problem. If the show started the deaf people would not have any access to the interpreters! I was a wee bit angry as we ran through the school to talk to the director.
He seemed concerned and a bit confused. When I told him they needed to be lit he said he couldn't do that. Well lets just say I got a bit demanding. I was told they would take care of it and that I should go back to my seat.
The show started late but the interpreters were lit and on stage. I am sure
I now have a reputation as a crazy lunatic. Perhaps I am pushy or even ungrateful but for years this kind of thing has happened. I refuse to let my friends sit watching a mute play on my son's birthday. I would have preferred to chat with my friends and just enjoy the show. I hate making a scene but felt I had no choice. Such is life for a mama bear helicopter mom.
The mistake was that there was a mix up and the platform the director wanted was never built. Honest mistake but it should have been corrected before the audience even entered the theater. My advice to anyone working with deaf kids in theater is ask the mom and deaf kid first. I am happy to help and I am an expert on my son.
So everyone had a great time. Haddy's old Deaf acting teacher came and a really cool friend sent a beautiful lei from Hawaii to the school. Haddy said it was an awesome night and for the first time he could see the applause.
Friday, November 19, 2010
I was asked to show up when the theater doors opened to be an ambassador for the deaf audience. I had already planned to be there to greet friends. The bus from WSD arrives and a staff member runs with me to purchase more tickets because there were last minute people added. Awesome. On the bus an interpreter who had worked the rehearsals gave the kids a synopsis of the show so they could follow along and not hang on everything the interpreter offered. This was an iron clad plan.
What followed was almost funny .... it almost ... would make us laugh if it were a joke....... but it was reality. Our reality is different than other people's.....
Yesterday was the big day. Since he would be at school from 9:15 am - 10:30 pm I decided breakfast should be special. I was going to make his favorite, eggs Benedict! I woke up early and realized the refrigerator was broken and all of the food was room temperature. Not a good start so I dashed out for breakfast burritos.
I asked if it would be fun to have birthday at school. He tells me his friends didn't know. Well it turns out they did and they sang happy birthday in science, his facebook page filled quickly with well wishes. I have a feeling it was fun.
After school the cast and crew eat dinner. I brought cake. The volunteer supervisor approached me and asked what to do about singing to Haddy. I tell her we should sing. She looked a little nervous like she didn't want it to be a bad experience for him. About ten minutes before the kids lined up they started filtering in asking me how to sign Happy Birthday. Soon the food line came in and a senior jumped on a chair and shouted,
"Hey everybody! Pay attention. Today is Haddy's birthday, this is how you sign it." Then 100 kids signed and sang the Happy Birthday song. They are working on a musical so I am sure you can imagine how beautiful that was.
So far so good. A magical birthday. I dashed out after the cake was served to meet my family and a good friend at a restaurant before the show. We had at this point about 40 people coming to support Haddy. The school has had him for over a year and I expected no problems since I had offered my help and the interpreters were well rehearsed. This was going to be awesome! I wanted to just relax and let him enjoy the night.
Well............... uh this is really a whole different post.
Wednesday, November 17, 2010
You are 13 now. A blog for your birthday.
I am prompted to write tonight about my deaf son turning thirteen tomorrow. Before the sun rises he will transition into the land of teenish. I know that is not a word. It is a Mel word but it best describes how I feel tonight.
Thirteen years ago I was in a hospital overjoyed with my new sweet baby. Moments before and after many anguished trips to the hospital in not so beautiful Hollywood, a place with far to many potholes in the road and jaded nurses for a mama in labor, my son was born. To my dismay friends piled in the room and one who was a film camera operator took the opportunity to jump on my bed and shoot the photos from the best vantage point not realizing the slightest movement was a jolt to me and my baby and perhaps the privacy of a birth takes a wee moment to clear away.
So the real point I want to make is tomorrow on my son's 13th birthday 35 seats have been reserved for the interpreted night of his play. The seats are reserved for folks who will be using the interpreter.
For years I have been trying to find ways to bring the hearing and deaf worlds together but in ways he can still be deaf. In ways he can be part off not an accessory to the world. On terms that both hearing and deaf can enjoy life together. There always was a hitch or red tape.
Last year he wanted to partner with WSD for a blended play. A lot of red tape later he was able to come with his teacher for one workshop but the kids loved it. A baby step.
When WSD came to buy tickets they needed a receipt and the person who could provide that was in a meeting. Red tape. It was resolved and the tickets were purchased. The art school thanked the deaf school for their support.
It just makes sense that as he moves into the world of teen, the world of more independence this is happening. Maybe just this one night but I will take it. One night both worlds will live as one in a way that feels right. A deaf actor will enter the stage and play a deaf role. A deaf audience will enjoy the show with rehearsed interpreters. And maybe there will be red tape or a glitch but I will take it.
No pressure Haddy. Break a leg and Happy Birthday.
I love you,
Sunday, November 14, 2010
We dropped the kids at Grandma's house and ran for the hotel! Adult time..... nice. We met up with our friends and separated into groups that would stay at the hotel, go to dinner or go find a bar. My hubby ended up with the bar group.
I was socializing with some girls at the hotel around 12:30 am. Yep, I had a few cocktails I was socializing. Life was good. ....
Above my head in a friends room the fire alarm starts blaring. I tell my friends and jump up on the bed to cut if off so I can call the front desk. The woman I talk to tells us to file out to the hall and come downstairs, use the stairs. I tell my friends and out we go. In the hall was a tired group of hearing people making their way to the stairs.
Down in the lobby folks were directed to go outside. Stand in front of the hotel they tell me. I tell my friends. The odd thing is I don't "interpret " for my friends. If I am going to lunch with a deaf friend I don't order for them or help them get a refill on their soda. That night the hotel was a "danger zone" and I just stepped into that role. Who am I to do that?
We were outside cold and deflated because we had been having fun and now we were concerned. We mentioned there were other deaf folks in the hotel. Maybe a lot. So we went to the front desk to ask. How about the other deaf people? Do they need to come outside? We don't have enough staff they tell me. Is this a real fire I ask? We don't know they tell me. So what about the other guests? Nothing we can do they tell me. Serious I ask? Yes sorry they tell me. So if the hotel is on fire you will just let them die?
The woman at the desk decides it is a good idea to give me and a friend keys to all of the deaf people's rooms. Wake them up she tells us. Get them downstairs. Huh? I am not comfortable really going into their rooms. I don't work here. My deaf friend tells me to just do it. Run she says. So we do.. I remember running down the halls. It was a deaf event that weekend so there were many rooms. I opened doors and woke up folks deep in sleep. We managed to wake up everyone.
Then outside there was a large group, deaf and hearing. Hands were flying trying to figure out what was happening. One man came out fully packed for the airport thinking my nighttime disturbance was his wake up call for his flight.
My husband walks up with the bar group. What is going on he asked? I don't know I tell him. So we wait. The fire department arrives. They find the "fire". An ice machine malfunctioned. We will all be safe. Go back to your rooms they tell us.
So what if the hotel was really on fire. I was told there was one accommodation kit. One box full of the emergency stuff we seem to never need.
Monday, November 8, 2010
There is one night that the show will be interpreted. The school has been doing this before my son was accepted with low turn out. We have gone to interpreted theater shows before only to find out the interpreters are cast off in the shadows or the show is to complicated for the one high school kid on stage. This time I am told it will be different. They are building platforms for the interpreters so the will be high enough to see. The interpreters know the dialect of the school. They have the script. Please let this be a great experience for all.
Today I found out 28 people from the school have committed to come! That means money collected. So I race to make sure the seats are reserved in the right place. I beg the school to hold the tickets until they get an official school check to pay. I can't go into detail about the red tape of a state school .
Then I sit back and think about the one friend who made that happen. She has dedicated her life to the school and the kids. She was my partner in crime when I wanted to add electives about art, acting and cooking. She never backed down no matter how crazy my plan was. She is the one who makes Special Olympics happen. She is the one who can takes on the kids who have had it the hardest. She is dedicated to the kids in a way that doesn't leave her when she goes home. I love her. She is an SLC. Student Life Counselor in her case means a truly beautiful person.
Sunday, November 7, 2010
Friday, November 5, 2010
It often happens when I get excited about something. Last week I attended a committee meeting. I had an idea and bam! The fingers start flying as I verbally explain my latest brainstorm. I am not signing in ASL just doing a sort of simcom thing.
At my daughters carnival I caught myself signing to her Spanish immersion teacher peppering in what little spanish I know. Yes I realize I am a big goof but it is out of my control. It is as if I think the teacher will better understand me with sign support.
Last week sitting in my mom's lawyers office talking about the interact dealings of elder law I did it again.
"Oh the hand thing, I have a deaf son"
I do it when I am eating. I will be talking and take a bit of food then stop talking and continue in sign.
This got me to thinking about when I was first learning. My husband and I committed to trying to sign everything we said. This was a frustrating few months. It was almost painful. We had text books and dictionaries in every room. We learned to make sure the books were published on the west coast where we lived. Sometimes we would learn the sign wrong and have to backtrack. Becoming conversational seemed like an almost impossible goal at first.
Then almost overnight something clicked. We were able to have conversations! We could turn our voices off at dinner. We still fumbled and made mistakes but we could see our goal in the horizon.
As time went on we become more comfortable. It became more natural and now it is habit. So much so I do it without thinking.
Wednesday, November 3, 2010
Over the last few nights as I watch my son walk out of rehearsal I have noticed him signing away with one of his friends. The other kid is hearing and they became friends this year. I knew this kid was learning to sign but what I saw startled me. They were conversing at a normal pace but not in ASL. They didn't appear to be using PSE. In fact for the first time I didn't understand my son. The boy finger-spelled a couple of times and not in the halting way a hearing person who is learning does. Their conversation flowed in the most natural way. They were so engaged. I asked my daughter to look and tell me what they were saying. I usually don't ease drop on my son but this was too weird. She wasn't able to figure it out either.
So maybe my tired eyes deceived me but it look like they created a new language. I will call it VSAASL (Vancouver School Of Arts And Academics Sign Language). Maybe I will contact Oliver Sacks to research it. I am sure he would take a look and tell my I needed to get some rest and the kids were just swatting at mosquitoes. I am sure my son would tell me they were using PSE and I need new glasses.
I love the way this deaf kid and the hearing kids at his school don't let hearing lose get in the way of a good time.
Tuesday, November 2, 2010
The cool thing is the district is awesome. There are a couple of issues regarding team interpreting for lectures but really given the red tape it takes to get approval I am impressed with the services and attention to detail the special education folks provide. They have years of experience with deaf education and listen to me when I have an opinion. For the first time I really feel like everyone at the table really wants my son to get exactly what he needs and has the power to make it happen. There was even a general education teacher at the table who is very dedicated to my son. She has done independent research and is determined to do the best she can to make sure my son's experience is on par with the other kids. Amazing. I walked away knowing everyone is learning but that I can trust the learning is happening, even with me.
It has been years of figuring out how to communicate my opinions that got me to this table. This is why I am tired tonight. I have researched for years. I have learned the law and jargon. This is a component of raising a deaf kid that only a parent really at the end of the day understands. It goes beyond your child's development and progress into a whole new academic world. A world that is foreign, off your radar.
While deciding on how you will raise your child you are also called on to protect that decision before you even get a real understanding of what that decision is. You are left to figure out how to negotiate, how to get to yes. You have to develop tools to ascertain who is really knowledgeable and who is intrenched in personal bias. You have to wiggle around "privacy" issues to get to the heart of why things happen. You have to hope you can create a team and not adversarial chaos. The most important thing is you have to do is
Leave your emotions at home.
So I am tired tonight after a good IEP. I walked away with a sigh of relief and grateful hope. My son skipped his meeting for the first time. He had a twelve hour day today and he was stuck in rehearsals. He was a bit ticked about missing it but the law has requirements and his birthday is sneaking up. On that night his show will be interpreted for the community.
Monday, November 1, 2010
I always tell my son he can try anything. I tell him To go for it. Most of the time we are all pleasantly surprised. Sometimes a wee bit disappointed. Halloween was just a really good laugh.
He really wanted to be Pac-Man. So the costume was built, at the last minute. Now take a good look at the picture. Could he have made it any harder for him to communicate? Remember my son is deaf. Notice the lack of visual access and the hands. He went to a party with his friends from school. He tells me that when he would go to doors with them he would get stuck in the crowd and not be able to turn to look behind him to leave. He fell down, the costume eventually ripped. We had a really good laugh last night he about his adventure. Good news is the costume was a hit and he had a blast and because the costume ended up destroyed I don't have to store it in my basement.
Friday, October 29, 2010
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".
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.
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.
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
"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
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,
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.
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 .
This provides a solid 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.
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
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.
Thursday, October 21, 2010
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
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.
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?"
"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
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
Wednesday, October 13, 2010
Tuesday, October 12, 2010
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.