Saturday, January 29, 2011

A Tribe of Many Cultures

"All religions, arts and sciences are branches of the same tree"
Albert Einstien

If you like my blog you may want to check out my friend's new blog. She just got started recently. Only three posts so far but her story is as complicated as mine. It will unfold, I am sure, over time. Our stories are never the stuff of a manual.

Our Greatest Journey

I met this family almost six years ago. I was their first ASL teacher. They showed up with a deaf infant and a toddler. I am a bit of a snob when I teach. I don't allow SEE signs or Baby Sign Language. My son visits to tell stories and I expect everyone to become voice off signers. There are other classes for folks who want something different. I am oriented to second language acquisition. Most of the folks who sign up have hearing kids. They were different.

So I mentioned they showed up. Mom and dad came to my class. Dad was an equal partner. I was shocked. I remember looking at their little baby and hoping they would stick with it regardless of what intervention options they chose. I remember how brave they were.

We were different, like apples and oranges, I am a free spirited artist and very liberal by nature. They were more conservative.  Turns out the mom is a talented artist and the dad is gifted in his "art" even though I doubt he would frame it that way. They have the same drive to make the world a better place. They love their children and are willing to think in such depth and not just do as they are advised.  They don't judge others..... maybe we are more alike than different? Turns out we are of the same tribe.

So a few years later..... I consider them to be trusted friends even though we have no political or religious similarities. We can ask each other candid questions without the fear of being judged. I can learn about them and not feel they will be threatened if I don't follow. I am allowed to understand. I can allow them to just be with my respect. They can expect the same from me. Huh.... that is my vision of utopia.

So the way I see it is we are all standing around the same tree. From my view the branches slope one way. From yours maybe it looks different. The guy over there that we don't know is seeing a branch that needs trimming. We are all looking at the same tree. How about we all work to take care of it?

Friday, January 28, 2011

Angry Birds and Ipods

 I have habits in regards to the radio when I am in the car with my kids. If I am alone with my hearing daughter I turn off the radio because she is always talking and the news shows I listen to are too adult. I also enjoy having that time to connect with her. When I am alone with my son I do the same thing. When I am driving without the kids I listen mostly to public radio.

In the recent past I have twice left the radio tuned into NPR on while driving with my son. The first time there was a story about waiting to go to college. My son was sitting next to me in the front seat. He turns to me during this story and out of the blue starts talking about which college he wants to go to.

The second time there was a story about local schools using ipods for instruction. He turns to me and again out of the blue starts to tell me a story about a girl at school giving him a virtual cupcake on her ipod......

A couple of days ago I was listening to a story about a game app for phones called "Angry Birds". When I picked up Haddy from school that day he was all excited about a game app he found called.......

So this got me to thinking. I remember when he was little, before the hearing test, he would seem to respond to sound. I questioned if he was really deaf and almost cancelled his hearing test. I knew a mom who stopped signing because her deaf son responded to a car alarm. At the end of the day my son hears not a sound in this big loud world but sometimes he startles me. As my son would say if I questioned him, "still deaf".

Sunday, January 16, 2011

This May Seem Strange

I apologize to my two friends for posting about a private meeting.

Today I had the pleasure of meeting with two friends. They are deaf.... maybe? I don't know if they are HH, deaf , hearing or what level of hearing they have. What I do know is how good it feels to sit and have a really in depth conversation in sign. It feels so good to just relax and know they understand me. My signing skills have slipped away a bit maybe but this felt like home.

So we were "talking" about something important to all of us. There is a freedom when you sign. It allows for people to connect and focus in a way voice doesn't in my opinion. I notice when I am in my sign mode I turn off my ears.......

Yep, my daughter does it too. I will be speaking her name over and over and she doesn't turn to my voice if her brother is signing with her. Of course I am also signing and shouldn't depend on her ears at home but it really interesting to me that our ears learn to tune out the noise.

So today I felt a sense of "home". We have a deaf kid who is mainstreamed and rarely get to have that sense. We are the exotic family with the deaf kid.  With my friends today I was just a mom and friend.  I love how I can just look at my friends and focus on their feeling and thoughts. I really can't explain why ASL is so connecting.... I can't really explain why it feels like home..... I can just share that today I am grateful to have had a moment where I wasn't the mom of the deaf kid. I can only share that I am grateful  to have friends and today gave me a bit of something I have been craving.  Our family is different but that is a good thing.

Wednesday, January 12, 2011

Free Hearing Aids

I live near two state schools. Both received free hearing aids for all of the students and staff. Nice. OSD's gift was made very public on a TV show.

So I was at a friend's house yesterday and she was showing me her daughter's. They are light weight and small. Nice. She said although she was grateful it was a pain to turn them off because you need to remove the battery which isn't all that great for kids.

She was also wondering how much it would cost to replace the earmolds which house the microphone? When my son wore hearing aides he would just go to the school audiologist to get new molds.

I don't ever think about this kind of stuff.

Monday, January 10, 2011

Music To My Eyes?

My son is staying after school to rehearse for the ASL showcase this Friday night. All of the ASL students auditioned for the show. Haddy was a judge. They asked him to join in for the show.

The thing that struck me last year is it is all interpreted music. It was cool but felt odd to me. I am used to going to the deaf school to see ASL poetry. My first instinct was why were they just doing music? A deaf audience might be really bored and it is their language. Then as I really thought about it this year I started to kind of get it. Just like lots of stuff I encounter living with a deaf kid, its complicated. I really don't have a conclusion but just a ramble of thoughts.

Part of learning a language is learning the culture. So I at first imagined the kids learning ASL poetry. By then I imagined what that show would be like. 500 hearing people watching with blank stares having no idea what is going on. ASL poetry is usually not interpreted. 500 people falling asleep in their chairs. The kids would not have a strong enough understanding of the language to really pull it off. There would be no shared experience.

Many deaf people I know enjoy music. Heck, even really deaf Haddy enjoys it when he feels it. The kids incorporate dance, lighting and props so there is a visual element. I guess I still feel a bit odd about it. When I asked Haddy what he thought he said it was boring to watch, all music.

Then I got to thinking this is the one show at the school where they won't have any accessibility issues. Shouldn't it be really as entertaining for the deaf audience? Maybe add more dance and a theater element? I remember the deaf folks who have attended the last two shows Haddy was in really loved the dancing. I don't know. It is just something I think about.

I also got to thinking that when we lived in LA we saw a deaf group preform music at Deaf Expo. It was really cool so maybe my initial reaction was misplaced. I would still like to see a little bit of deaf culture injected but how cool is it we live in a time where there is a whole evening show dedicated to my son's native language? How cool is it that the ASL program has a waiting list?

So what would a deaf native signer want to see that would be accessible to a hearing audience in a way the bridges the two communities by limiting accommodation? What can a deaf person tell me about watching interpreted music? Is there a different way for these kids to showcase the accomplishments?

Sunday, January 9, 2011

A Simple Question ...

What does it feel like? Uh, to be deaf.....

How do we do this better? Uh, parent of deaf kid....

What do I do different? How do I do it?

Those are the questions my husband and I asked. Now that we are 13 years in I feel it is important to ask again.

What tech stuff do we need? What did we do right or wrong? How can we be better parents? Anything is a fair question or answer.

I feel we, as parents, hold on to our way and never look back. I am just wondering if there is something we missed?

Hearing Loss

It seemed a bit funny to me today watching my kids at a birthday party.  I have heard this phrase mentioned in regards to my son, "He suffers from a hearing loss".

That never really felt right. He doesn't suffer and he never "lost"his hearing. How can you lose something you never had. He has however, lost his hearing aides once or twice as a wee kiddo. Deaf people come in all shapes and sizes. Every deaf kid is effected by the level of their hearing. Every deaf kid hears (or not) in different ways. My kid doesn't hear at all so he navigates the world in a way that is suited to being non hearing.

I was standing in line at this party across the room from my son and saw him fluently signing with someone. There was a natural conversation happening. Turns out this man has a deaf mother. She "lost" her hearing at age 16. That is a hearing loss in my opinion. She had it and it went away.

I just was thinking about how we use language.

loss |lôs; läs|
the fact or process of losing something or someone 

suffer |ˈsəfər|
verb [ trans. ]
 experience or be subjected to (something bad or unpleasant)

The party was a blast. We had a friend tuning 4. My son made friends with a 12 year old boy. They used their phones to communicate as they played. They are now facebook friends. The boy attempted to initiate this by by using a made up sign.... my kid understood. He doesn't suffer but he did drink too much soda.

Saturday, January 8, 2011

A Very Loud Awakening

This morning the whole family planned to sleep in. This is rare for us so my husband and I are excited.  By 6am my mom starts calling my cell phone which I quickly turn off and float back to sleep. Soon after the other phone starts ringing followed by mom's dog (who never makes a sound) yapping at the front door. This prompts the big dogs to whine obviously annoyed at all of the commotion. This wakes my daughter who starts singing off key.

Soon my husband and I are stumbling out of bed grumbling. There will be no sleeping in today. Wait, Haddy is still sleeping. Membership has it's privileges.

Thursday, January 6, 2011

How Much Language Do We Allow?

In my last post I talked a bit about the obstacles parents face when they first find out their child is deaf and how we came to the place we are. This topic is so complicated I plan to post several times about it addressing my opinion on the different factors I feel are involved.

 One thing I notice is a general fear of encouraging a child to become  bilingual. There is a feeling that the child can only acquire one language. Marla was kind enough to leave a comment on my blog and this sentence hit me like a ton bricks.

"Don't know if you are aware, but in the State of California, only 8% of 4,000 deaf K-12 students are reading at grade level"

Ok, so I didn't fact check this data but do I need to? We all know the struggles our deaf kids face when learning language. The other thing that research suggests is hearing children benefit from being bilingual.

In America we live in a paternalistic mono-linguistic environment. In other countries children can be taught many languages at the same time. There seems to be no feeling of language entitlement in the counties that do that. I feel a child can acquire language without stress at an early age.

So instead of thinking about my bilingual son I am pondering my trilingual daughter.

She was born into a family that uses ASL (maybe PSE since we hobbled along alone)  as primary language. Her hearing parents are native in English and her crazy mom tossed her into Spanish immersion when she entered kindergarten. At home she uses spoken English when her brother is at school. That is two hours a day.

She used her first language to navigate the second. She used her first two to easily pick up the third. I am not a hotbox mom so I never taught her written English and all on her own she figured it out. She loves to write in English and Spanish. She code switches with ease.

Yes, she does sometimes need clarification on definitions in English but that takes two seconds. She can quickly relate to another language to figure it out.

So why can't our deaf kids be bilingual? My son has really cool abstract thinking skills. He plays with English all the time as easily as he plays with ASL. Yea, sure, sometimes he needs clarification but it only takes a second.

With the command of language my son can be a critical thinker. Here is an example from last week,

His literature teacher gave an assignment that was to be a book report supported by artistic examples. She asked the kids to pick from a list of awarded authors. My son loves graphic novels. He asked if his report could be about one of his favorite authors?

Thoughtful pause, "Yes, if they have won one of the awards listed."

He jetted down to the library and found a favorite author had won an award. He explained his point to me,

(This is not a quote just the paraphrase of his opinion because I have to translate to my lousy command of English)

"Mom, people are not looking forward. Comic books and graphic novels are modern literature at this point. People look down at them as kids art. The truth is these writers are very modern and latter we will look back on how this form of writing connects with the modern kid and society. We will see the same messages presented in an artistic form but in a way people understand at this time. We might find they are the new "Classic" authors. My report is going to combine not only the original text but also film and contemporary culture."

So my bilingual kid and trilingual kid don't fit in but I am a wee bit happy about that. I don't want my kids to live feeling they have to "fit in". I want them to know that if they can think and learn they can do anything they want. I feel our country is not accepting of other cultures as much as I would dream of and maybe, just maybe, my kids will be.

Wednesday, January 5, 2011

Location, Location, Location

So many people advocate for all deaf children to have access to ASL as a native language. I am one of them. The problem is that it is very complicated. One obstacle is where you live. To be totally honest I don't always think that is a valid excuse.

There is the argument that a family may not have access to classes in a rural area or fluent signers to practice with. I challenge that because I was geographically isolated in a big city with plenty classes.  My challenge was I worked about 16 hours a day. I didn't work with anyone who signed. I really didn't see my family five days a week. At first we hit a wall when trying to find fluent signers to hang out with when I was off work. We were a nation of three.  I believe if you really need something you have to do whatever you can to make it happen.

So I bought a book.

Every spare moment at work I poured over it. Some folks I worked with wanted to learn (with a little pressure from me)  so I had people to practice with. Some might argue that they can't learn to sign from a book. I challenge that, make it happen. A running joke at my job was, "You can sleep when you die". Find the time and a way.

Reading ASL gloss is strange at first and maybe confusing. READ the first part of the book, the boring part that tells you how to do it. Learning this way is not my style but I needed to do this. Maybe a parent doesn't have a text book. Maybe it is too expensive. I find Goodwill is a great source. ASL students donate old text books. Really, if that is the problem contact me and I will make sure you get one.

13 years ago I didn't have the technology resources we have today. We had clunky TTY, email, a few captioned videos (VHS) and a captioner that worked sometimes on the TV. Now if you have internet you can access ASL online. You can visually call people in many ways (I just got a phone the has video chat). The world is not as isolated. Go online and find a way to get help. Can't afford it? Fair enough but does the SSI check really only go for things for the child? If your child was hearing would still spend the money the same way? We don't get SSI but if we did it would go to the best way to support Haddy.

Harsh? Yep.

One the other hand if a rural family doesn't get on the radar how would they know to make it happen? JTC has a correspondence course for families. Where is the ASL version? Where is the national advocacy group the seeks out new families and offers services without pressure or bias? I mean a group that makes learning ASL accessible not just a soapbox. Wait, there are groups out there that would jump at the chance to help families! Are parents given this information? If so how is it framed? How are these groups funded? Do companies have an interest? Do these groups have funding to help provide accessible services?

Another challenge is families who are ESL and maybe some who  don't have the supportive educational background to step up on their own.

Funny, when we lived in Los Angeles they majority of hearing families with deaf children that we were able to socialize with in ASL were from Central America,  really poor and with REALLY limited English skills. They had the same access to ASL as the more affluent families in the district that didn't sign. If you have the option you can make a choice and make it happen.

It took thirteen weeks to get to a point where I could have a conversation with a deaf native signer without feeling confused. Thirteen years later it is so comfortable sometimes I forget all people don't sign.

Another running joke at my work was, "Cowboy up!". If you feel worn out and wimpy get tough because it does get better.

Hearing Parents Need Support

Yesterday I was sitting in my car ready to pick up my son from school. I saw him across the street chatting with a friend. She was telling him about her martial arts class. Then they joked as they waited for the light to change so they could cross the street. A fire engine raced by blocking my view for a moment blaring an ear shattering wail. He is deaf, she is hearing. She has been studying ASL since September. He has been using ASL to freely communicate for  over 12 years. I know she is a first year student because the conversation is peppered with a lot of fingerspelling. I know she has a desire to learn ASL because of the speed and fluency of her signing. It is hard work to learn a new language but this kid is motivated. She seems so comfortable. That is not the case with many parents I meet.

As I sat there  I remembered the day I was sitting with a friend as a fire engine passed and my sweet little baby didn't flinch at the noise of a siren. I remember later his first audiologist telling me that with practice he could maybe hear a fire engine. I remember how terrified I was. I remember how lost I felt. There wasn't clear cut option to follow. It felt like the world didn't really care about our family at times.

Yesterday I just felt calm and a bit in awe at how easy it is for my son to navigate and enjoy the world. I sat there and remembered how hard it was when we first ventured out. I remember that the idea we would be working to hear a fire engine just wasn't good enough. I am also looking back and thinking how funny that is. My son can see the signals at the crosswalk. He is not going to jump in front of an emergency vehicle because he can't hear it. I also marvel at how the world comes to him. Instead of him struggling to talk to this friend she is working hard to sign to him.

Often people just assume he is just a really smart exception. Often they don't care how he got to this point. When my son was very small we decided to follow research that suggested a first native naturally aquired language would be the best course for our son. We were so excited to get going then realized folks just were not ready for us. In theory everyone was on board but they didn't have the resources to really help us because we were the minority and the system wasn't set up for families like us. We were surrounded by hearing professionals with years of experience with families different from us.

A lot of people suggest families should do what we did. What I know to be true is it is a path laden with obstacles. Everyone was so excited when they saw we were signing with Haddy. It pretty much stopped there. The system in place only supported sign language as a backup tool to use in order to support hearing. The idea that we needed full immersion to be successful was not on the radar.

So when people blame families for not using ASL as a first language they are really aiming at the wrong target in my opinion. It is so difficult to get support I am not surprised we are a rare find. We had to do a lot of the work ourselves.

First consider the parents. If you have never met a deaf person you are a deer in headlights when the professional gives you the news your child is deaf. At this point you need support.

We were lucky Haddy was our first child. Imagine if the child is third in birth order. Taking care of a newborn child is exhausting. Being the responsible parent to the  other children makes the task more difficult. How do you get the whole family to voice off at dinner when you are just learning labels? What if there is a "sign" class available but it only services the baby sign crowd? What about the parent who has never met a deaf person who signs or if they have they felt awkward? The professionals you meet first are all hearing maybe. So where is the example of a positive outcome?

 In our society most families need two incomes. That takes time away from parenting. Some parents don't have the socio-economic resources to independently research options. It takes time to try everything and sign language is perceived as something you do if everything else fails.

 Even if a parent chooses our approach they needed access to language fluent environments constantly. I noticed most hearing early intervention specialists have a hard time turning their voices of with non ASL fluent parents even when that is the objective. You learn faster with immersion. Sometimes that is not comfortable. Teaching a child to speak is in the parent's control. By learning another language you are shifting the control. That can be scary. You have to trust people who live in a different culture. You may be told about dismal outcomes for deaf children. You also have to immerse your child in visual language which can take away from other approaches.

There are other reasons I believe that influence parents. It is important to consider geography, culture, available resources, critical mass and the fact that we are a consumer driven society. It is very complicated from my perspective. I could go on forever and I probably will.

Tuesday, January 4, 2011

We Use ASL

We use ASL as the primary language in our home.

Does anyone wonder why? Does anyone wonder how much support we got? Does anyone really care?

It was a mess.....

We did it on our own.........

Yep.... I have something to say.....

Do you care?

Saturday, January 1, 2011

Mainstreaming and Oven Fires

Mainstreaming is interesting,

I have been playing with my blog a lot over the last few days. There are reasons for that. It is something to do while I sit on hold waiting to straighten out my mom's affairs. I wait for folks to understand that I am in charge. I wait for them to help me straighten out her life.  I wait while I deal with the fact that it is over.  "It"  meaning my mom. She will never be the same old mom.

I want to take her away..... far away.... but it will not help.

 The oven caught on fire, the dishwasher is broken, the fridge is leaking, as is the fancy washing machine. Fancy computer A refuses to go online. Fancy printer A refuses to recognize Fancy computer A. Clunky Computer B can't print nessecary documents because clunky printer B doesn't reconize the black ink cartilage. So rather than face those challenges I play with my blog.

Tonight we played "Monopoly"

What a great game! Tonight my kids learned about how to buy a house. My kids learned about "mortgage"

That is not stuff we talk about but the game gave us the venue .... we played the game I played as a child. They learned words we sometimes hide. Words meant for grown up folks.

We had a blast..... deaf kid got a lesson.... as did hearing kid......

So my deaf kid won.....