Well of course it isn't easy...

So my last post was about how nice it is to start the school year in a calm fashion. No issues to confront. The school in on board with my Deaf son. Life is good. Mainstream is really working out. My son loves it and is thrilled school starts next week.

So as a formality I contact the person who manages my son's IEP services to find out what his interpreting services will look like. Last year the plan was a team of 2 highly qualified interpreters full time. I email asking about her vacation. Lamenting the brief time we all had to enjoy our summers. Then almost as an after thought I ask the question. What will his interpreting services look like? I push send and go about my busy day.

A few minutes later I response pops into my inbox. There is a flag on the play my friends. Two new kids entered the district needing interpreters. Two interpreters quit. so now the district is short four..... yes.......FOUR interpreters. *oh sorry for shouting*

So we don't know what next year will look like. There is nothing to fight for at the moment. The school district wants my son to have his services. They are interviewing prospects. I can't force folks to apply for the job. One person I was talking to said that maybe someone could volunteer...... yes dear the same way an airline pilot could volunteer to operate on your brain. Not her fault but it is always exhausting talking to people who know nothing about it. It would be worse if that person worked for the school district so I am patient.

So while other parents are shopping for new jeans and #2 pencils I am leaving offerings to the interpreter fairies.

The School Bell Rings

Next week my son will start his third year as a mainstream student. I can't recall ever starting a year with so much calm. Since the day he was identified there was always something to fight for. There was a service or interpreter issue. There was a teacher to educate or an administrator to address. Things that seemed clear to us were always riddled with red tape and bias. This year we simply picked up his schedule and payed his fees. I woke up this morning and the first thought that came to my mind was what would go wrong?

He got the classes he wanted. We like the teachers he ended up with. What could go wrong? With years of practice under my belt I have learned anything can go wrong. So today I will contact the district to see if the interpreter team is scheduled and qualified. So far that is it. So far it is just a maintenance email to remind the school I am still watching and supportive of my son's education. As I sit here I realize the emails will slowly become his job. We have already shifted a lot of his advocating responsibility to him. Hopefully this year will not focus so much on his right to access but more on his theater and photography classes. This year will hopefully be about getting homework done and not about watching lectures and scrambling to take required notes at the same time. Hopefully this year every movie will be captioned. Hopefully this year we will be able to see what it is like to be typical.

Nothing Clever But Really Cool

Wednesday was amazing. My son is in an all hearing physical theater company. The cool thing is they don't use their voices but only their bodies. Wednesday they went to the deaf school to showcase their theater form. It was awesome! After the show the director and company answered questions and invited the deaf kids to join the company next year..... this was very well received... next year will be such a great year.

Today my son and I took off for  the Oregon Shakespeare Festival in Ashland , Oregon to watch Howie Seago, professional Deaf actor, perform. Howie is a rare bird. The kindest role model ever and Haddy is over the moon excited. We will see and interpreted show and go on an interpreted backstage tour....

Life is good for a Deaf kid.

I see What You Are Saying

Tonight I was volunteering at my son's school working the back of the house at a dinner show. Last year as the actors would pass me back stage I would notice some were signing with him. Some would come up to me and make attempts. Cool.

One year later as I sit back stage I notice almost the entire cast and crew is signing conversations with me during the play. It seems it is the most natural thing to do!

Awesome

Hold On Mom.....

"I "forgot" to clean my room and I need to pack my barrel for our adventure in two weeks. I am a teenager so I will selectively notice you when you are signing. For some reason at age thirteen I have all of the answers. "   

Dear creatures that came from my body,

Yes, it is my duty to embarass you morning, noon and night. Parenting is a 24 hour job.

I will always  love you but not so much the mess in your room.

Warmest regards,

The woman who spent 18 hours in labour 

Dear Mr. Shakespeare,

Dear Mr Shakespeare,


I am sure when the stories were forming in your head being ready to commit to paper the idea that your words would prove the world to be a glorious place for a Deaf kid was not even on your radar. Well if I had the chance I would inform you that your words by chance have  shown me the journey we all take is meant to be and if for some reason it is off the beaten path there will be magic and a reason for gratitude. 


Gratefully,


Mom of deaf kid trying to get it right


So I posted recently about my son wanting to go to a Shakespeare intensive  theatre camp this summer. It was a short blip I tossed online in a moment where I felt helpless. The outcome was..... well..... I am sorry I don't have words.

Haddy has four interpreters lined up to work with him at camp....... he gets to go and feel like a typical kid who happens to want to learn about "The Tempest".  The folks who stepped forward to solve this challenge are ..... again ...... no words..... I really don't have the words......  

The other outcome was a gift we would have never imagined. So he has written thank you notes and handed them off to me..... I have been sitting here trying to find the words for my side of the notes..... again..... I can't find them.

 Dear Mr. Shakespeare,
Spare some words for me.

The Thing About Life

So I had a crappy day. Yep, really crappy.

Time for my hearing kiddo to go to sleep....

"Mommy, but you need to read to me....."

I do, I start..... I am lousy.....trying, my voice is like a snail on a rock.

My deaf kid takes over.... they have a story that he has made up.... it is a sort of a chronicle about my daughter's life. They tell me it is called "Unibrow!" Uh, this is maybe OK?

So I am sitting here, being grownup,  with tons of stuff to figure out and my son is signing the next episode of "Unibrow"

I am grateful for the laughter

"So, Like, I Woke Up And Like"

Sometimes my daughter and I venture down to the playground next to my son's school and wait for him to walk out. My daughter runs off full of energy to play and I sit and watch.

This is the part I shouldn't share maybe,

Friday I was sitting on the bench signing to my girl because talking is a strain at that distance. There were two kids, the same age as my son, on a tire swing in front of me. A girl and a boy. I think they thought I was deaf.

So the girl was talking so loud I couldn't help but hear every mangled word she vomited into the atmosphere,

"So, like, I like, got this call and like it was a guy wanting to like, sell me a car and like, I was like saying like I am only like, thirteen and like he just kept like, trying and I was so like, freaked out. I really like  doughnuts and like, my mom took my dog to the vet and like ....."

This goes non stop four about 4 minutes. She didn't even pause for a breath. Of course being of sound mind I was trying to remember how to do CPR if she happened to just pass out from the sheer energy it took to talk so loud and mangle every thought with "like".

Then she pauses waiting for the boy to respond and he does,

"My Xbox is broken"

This prompts the girl to open her floodgate as she glances toward my kid's school,

"OH MY GOD!!!!! like here comes, like, the art school kids, we should go down there and like yell at them, like in a accent, like, yell something funny like, "hey art school freaks!" Yea that would be funny and like, it would freak them out....." * fill in the blanks this went on for at least two minutes*

They get up and walk away when the art kids got close as though this great plan was really just a way to show their frustration that they were not "art school freaks".


So I sat there feeling like I had been verbally assaulted. The word "like" was swirling around my brain causing a wee bit of mental pain. Then I got to thinking as my son walked over. You see having a deaf kid has perks! I don't have to sit and have a conversation with him holding a Teenspeak dictionary. Of course he is a typical thirteen year old and he drives me nuts but....... I am not assaulted by his language....  he doesn't use his language to fill every space within reach. If he has a thought he frames it in a way to best express it. Sometimes I don't agree but at least I understand him.

My next thought? Is my hearing daughter going adopt the teen code that will surely give me a headache?

Remember The Time....

My family has been sick for days..... the icky fever kinda sick..... the thing about a fever is it sends you to a place we call LALA land.  This is a true story....

When my son was about 18 months I was a partner in an art gallery. It was awesome!!! So one day while I was at work on a soul sucking TV show somewhere in the remote regions  of LA my husband walked my son down to my gallery to write and handle the shop while I worked.

My son starts to puke.... uh ... then he turns white........ my hubby calls 911.... he walked so no car for the transport to the doctor and Haddy was really sick.....

I get a call that my family is stuck at the hospital on a Hollywood blvd... my son is naked and ..... they need a ride home. I am at some random location that I arrived at by following a map at 3am.

My husband calls for a taxi. At this point we know Haddy is naked because of the puking and invasive hospital stuff.

A taxi arrives.... my husband notices there is no car seat for naked Haddy.

"Don't worry, use the armrest"

A quick phone chain frees an executive from a show shooting close by who buys a car seat and transports my family home.


OK, so at this point I should of decided to move.... nope... waited a couple of years

There are folks in life I wish I knew- Alan Champion

I don't have many words for this but he is a person I wish we had  known.  My words are lost because how does one express celebration for a stranger who feels like a friend?

My son  has sat through so many shows ..... trust me........ this man was a true talent....


.http://www.nytimes.com/2011/04/25/theater/alan-champion-sign-language-interpreter-for-theater-dies-at-55.html

That Really Humble Moment

Not even really sure what to say.....

I have learned over the last 13 years that even when I feel like a two year old kicking and screaming the community we stumbled into will show a side of humanity that stills cares for the children, the folks who need a voice, the mamas who just need a map and the friends we find along the way.

From a very young age I  have refused to ask for help. Somehow I think I have branded my eldest with this trait. Tonight my son and I had a really cool conversation.


So first to quote my son, "Mom, really? Another hippie thought? .....Wait... what? What? I am going to have theater interpreters?? Larry?  No? huh? Mom what did you do??? I am confused...Oh..

*mama explains in detail*

 " mom I can't take that"  

 Sometimes it is not help but community. 

thoughtful pause, thinking hippie mama and deaf son.  

Deaf son at a later time " oh, by the way, I think they are doing "A Midsummer's Night Dream" next year at school!!!!!  " *turns out thirteen is the age of random multitasking thinking.......*

and second that hippie quote he was referring to,

Speechless and grateful for the gift of his community.

I remember..... I will never get mad... I will make the world change for me....

So about a million years ago,
I was born.
Nothing special, a white kid with a super pretty home.
Or maybe I just imagined it was,
Ever go back and see how small?
Later.......I found out my dad was super cool... he was an artist.
Me too?
Later I found out  that was wrong because we need to manage our finances..


My kid...... ?
OK-
Get your act together !   ........

No
Your act
Is fine

Mom will manage,
I will still embarrass you with my corny jokes,
My talking with your friends,
But you will manage on your own,
Laughing with me,
We have that.


By the time you read this
It will be so easy

Love,
Mom


A letter to my son before I get sick like my mom

Local Folks Check This Out!

See What I'm Saying

This is where my family will be Wednesday night! Hmm... great timing.......

Changed My Mind

Sometimes I want to kick and scream like a two year old.

Yep, at 44 years old I really do....

Uh... Yea the Deaf kid...

OK, so Haddy wants to apply for Summer Intensive Theater Camp at VSAA. Great! Only one problem, 

This camp is for VSAA students who are focused in theater. Yep, Haddy is.... but he is deaf. The teachers are providing this privately. That means ADA doesn't apply. That means that in order for him to participate if he is accepted he needs theater interpreters. He needs volunteers, qualified with a background in theater,  folks who can handle Shakespeare. 

Our family can't afford to hire them, ASL students can't do this. 

So what does a mama do? Sorry kiddo you are too Deaf to join? I can come and try but I need a team or a partner for theater. I am feeling a bit sad. like maybe I am not doing this right. How do I tell my kid I can't figure this out?

Funny the picture for the flyer is of my Deaf kid. He is the commercial for camp and I know the teacher wants him there maybe. I don't know, I really don't. 

Blech! Sometimes I feel helpless....

Huh

So my son tells me the ASL students at school have started telling him he is making mistakes with his signing. They are learning some different signs then he uses. Now what is interesting to me is when I was first learning I was told that you go with what the deaf person uses. I am also often told by Deaf people his signing is beautiful. They are often shocked by his fluency. Granted he wants to take ASL at the college level to polish his native language but it seems odd beginning students would feel the need to "correct" him.

I have a feeling the hearing ASL teacher is either using a different dialect than my son's or dated text book signs. I am also curious if the text book they use was published on the West coast.

Mty son is a native signer. He has a blended southern California/ Northwest dialect. For example the slang he uses is from years at the state deaf school and the deaf school in Los Angeles. Often the older kids come up with the slang so it can be regional. They ASL students are not taught slang.

My son also will sign some things the way he learned from the deaf community in LA because he likes it better. Signs like strawberry and cheat. This doesn't mean he is wrong.

This is not a big deal but I am just curious how much deaf culture the students are learning along with the language.

Where do I Start? Scream Therapy?

It has been awhile since I have posted. Life does that to people. It sweeps them away on different tangents sometimes floating far from where we start. Leaving us to swim back and get anchored. I have a few thoughts, not all very interesting, and I guess I will just vomit them out. Deaf stuff, mama stuff and if I have the energy a recipe (well maybe not a cooking class tonight)

Scream Therapy

I found myself a wee bit stressed out with my mom suffering from dementia, long story. I found myself suffering from panic attacks. Of course the first time this happened I assumed it was a heart attack and privately said my farewells. Well poo, just garden variety panic attacks.

 Turns out thrill rides are a great cure for folks like me who don't want to partake in the medication route. I decided on a Tuesday to fly out on the Thursday of the same week for Disneyland. Yep, two days to pull it together. You see the only choice I felt I had was to get far away and do something that required not a single brain cell and omitted any driving from the schedule.

IT WORKED!

Space Mountain is my new Xanax. As much as I feel like screaming up and down my street at home I am sure it would be met with visits from the police or at least gentle first responders with straight jackets. On a thrill ride it is expected you will scream your ass off. Your body must release something because after the ride I felt like a new woman!

That Asshole Kid At The Pool

OK so this is a hot topic. The BULLY. Haddy was only approached by a kid like this once when he was four. So at the Disneyland hotel we were at the pool feeling relaxed and groovy. Two older girls did the typical notice the deaf kid thing and tried to practice the few signs they knew behind a rock. That is cool and cute.

Next I see a kid around ten years old mocking Haddy.  She is whispering into her friend's ear making fake signs that are pretending he is "delayed". Yea, they used the "r" word. They thought I was deaf so it was easy to stand next to them and listen. They kept at it then enlisted the help of a boy to tease Haddy.

I could of let him handle it. He is really clever and can disarm  an idiot with his hands tied but just this once, fully relaxed from scream therapy, I let it fly.

I leaned down to eye level and said,

"You know if you keep  staring  really hard, he will turn GREEN * whisper * Yep, it is a deaf thing"

The adults who were sitting close by watching the little bully kids laughed.... thumbs up they show me..... the bully kids were embarrassed that everyone was laughing at them. Not so cool to plan a sneak attack on a kid when every adult around you is laughing at you.

Haddy was mad I stepped in. He doesn't get bullied an I suspect he wanted to do the honors.

He forgave me since he can't help coming from my body and I am a pretty OK mom.

I gathered my kids to go search for a ride we had yet to discover and scream with my favorite people.

In Defense Of The Arts

I love this picture. It was taken while my son was goofing off before curtain a little over a year ago. I love how comfortable he is in his skin.

He was the only deaf kid in the play which had a lot of improv. He was a principal and the only middle school kid cast as such. This experience was natural for him, like a second skin. He was completely joyful. For him it is about the work or the moment. He becomes a character. Once he is finished he becomes a bit shy of the attention he receives, his hands go into his pockets, head slightly down and he issues a nod a thank you to praise.  He is modest about his work. This picture shows his passion for just being himself with freedom. He doesn't need the praise.

The reason I bring this up is every time my son learns from theater he gains more self confidence. He learns the trick of managing the nerves of public speaking or assertive self advocating. By studying character he learns how others think and uses that information to develop empathy and strategies to negotiate this world which could potentially judge him at every turn. He can memorize his lines after two readings of a script.... hmm ..... literacy....

I guess my point is every deaf kid (or hearing in my opinion) benefits from the arts on many levels. I notice in our area we focus on raising test scores and art is left behind sometimes in general education. Art is a valuable resource. I have never met a deaf kid who didn't benefit from it.

No Words From Me

I have very few words to describe this.


This is so crazy.... Haddy wants to learn Spanish. He has been studying the written form independently. He just does this kind of thing. 


He wants to help Stelly with her homework and realizes some of it is spoken. They are so close but do not share this one language. She is in Spanish immersion. He finds an app on his phone that translates his text to spoken Spanish..I am sitting here resisting the urge to go down and help them. I don't need to....


I really don't need to....

A Walk Down Memory Lane

Today was weird. Just plain weird.

I need to dissect it and compartmentalize it for this blog but imagine the past tumbling down with great force on your nice poached egg and toast breakfast.

The first thing I will broach is some papers I found. I may choose to post about the rest of my day later or choose to let it float out into the world.

12 years ago.....

My husband was a writer and I was a costumer in Los Angeles. I had a steady gig on a TV show so he was the stay at home dad until my show would die. He was able to take ASL classes at the college level. I studied from a text book on stage. Somehow we managed to voice off in 13 months at home. This is Deaf culture paper he wrote as a requirement for his class. *excuse typos I scanned it and it came up a bit off*

My husband's first ASL Class Culture Paper


Cultural Awareness Assignment #1
Date of Event: January 22, 2000
Type of Event: Deaf Mentor Date
Location of Event: My home and Kokomo's Restaurant
Due Date: 2/2/00

Once a week myself, my wife and my son meet with our Deaf Mentor, Maxie.

She comes to our home for a couple of hours and each week we try to do something a little different. One week we'll go to a bookstore, another shopping or sometimes we just sit and play in the yard. The main purpose of her visit is to be a positive role model and a sort of Big Sister to my son, Hayden, who is profoundly Deaf. For my wife and I, she is someone that will answer any questions we have about things like Deaf culture, ASL, and what Our son can expect to encounter in the hearing and Deaf worlds. Because she too is profoundly Deaf and uses sign only, we are able to turn off our voices and practice our sign, while also getting a glimpse of how our  son might navigate the world.

One thing we notice a lot when we are out is that people stop and stare when we are signing. Other times total strangers will interrupt our conversations to ask questions about our son. My wife and I aren't used to the staring yet and are sometimes distracted by having our every word watched. But we noticed right away how Maxie simply blocks out or ignores the people around her. Other times, people have seen us signing and assumed we are all Deaf. Sometimes it's funny When people realize I've heard every word they were saying about us, but other times it's hurtful and I find it very hard let it go when people say offensive or insensitive things. On this trip, to Kokomo's restaurant at the Farmer's Market, most people were watching us out  of curiosity and commenting on how great it was that a two year old was signing so much.

Most of our lunch,was great, but I was very curious about how we would order at the restaurant. I've been with some Deaf friends that write their order, while others point at the menu. Other friends of ours don't mind if a hearing friend, Interprets, but I wasn't sure how Maxie felt about that. When the time came Maxie started fingerspelling her order to the waiter, who we knew didn't sign. My wife interpreted for her, which she didn't seem to mind. The only compromise that comes to mind is that of language. Maxie waits patiently while my wife and I struggle to sign something or when we can't read her fingerspelling, she slows down for us. On our end it's hard to forgot everything we know about English and try to think in terms of pictures and concepts, instead of words and phrases.

Overall our mentor dates are a great opportunity for all of us. My only confusion is about when to interpret for a Deaf friend. During conversations with hearing people that don't sign, it seems to be okay, but in others instances, I'm not so sure.

My lasting impression is that these dates are by far the most valuable thing in my son's parent infant program. In an education system where most teachers of the Deaf are hearing or hard of-hearing, it's refreshing to find someone that my son can relate to and learn from. Maxie teaches Hayden and us, things that a hearing teacher would never know. And each week my wife and I relax a little bit more and realize that our son's world can be whatever he wants it to be.

The Invisible IEP

So recently I have been thinking about the challenges my son faces mainstreaming at an arts magnet school. The good thing is everyone wants to make sure he gets the accommodation he needs but the outcomes of their efforts sometimes fall short. The constant seems to be that they don't trust my opinion. My perspective is he would not be doing so well if I hadn't spent countless hours researching and implementing practices to ensure he would have the tools to be successful in school. I am not saying everything I have done worked but I learned from mistakes I have made.

I have found an IEP is sometimes just a piece of paper that is tossed aside after a long and sometimes difficult meetings. I have found often the experts wait for problems instead of taking my advice and in advance in order to avoid them. I have found my son sometimes doesn't self advocate because at the end of the day things take to long to change, it isn't that big of a deal and he can get the information in other ways or he doesn't care.

My son meets with his case worker before school every couple of weeks. He used to have pull out for English and math during class time. We found it wasn't helping and it took away from class time. That model may work for some kids but not mine. The idea I had was to have him use teacher office hours after school if he needed help. The district brought up the idea of having the interpreter help him during class. She would be acting as an support for instruction. I very strongly disagree and made a strong objection.

They pointed out that research suggests this type of model works. I pointed out the interpreter is not hired as an aid and needed to focus on the difficult task of interpreting class that last 1 hour and forty minutes. I did mention two interpreters would be appropriate because the classes are so long and there are three a day. Nope, not going to happen this year but it doesn't hurt to ask.

So after that meeting I find out they didn't drop the pull out services. My son tells me they call it English help but all they do is test his math skills, over and over. His teacher gets frustrated because they pull him during lecture. I am not positive but I think  they pull him from English class. Meanwhile the classroom teacher has done research about deaf education and has found a way to specialize his instruction so he is learning faster than I could of hoped for. He is happy with this arrangement but hates the pull out. So I shot off an email to the case worker.

A couple of days pass. I get a quick response saying she will think on it. I think that is code for "stall crazy helicopter mom while we think of a way to make it more useless and complicated".  OK, thats not fair of me but I feel that way sometimes. I do know they are all busy but all I am asking for is they trust me and drop this one service or explain to me how it is effective.

Last night my son tells me he had a meeting with the case worker. I actually like and respect her. The only thing about the meeting that got me a little ticked was the fact she told him they were going to have the interpreter act as his aid. " We know your mom is strongly against it but we're going to try." *nudge, nudge*
I asked him how he felt about it. "dumb idea"
I asked him how he responded. "OK"
"WHY????"
"because it will never happen. They don't do what they say they will"

So in order to get what he needs he is side stepping the plan. He will find a way to get the service he wants without confrontation. If he accepts the idea on the surface perhaps the pull out will go away.

The awesome thing is all of the people involved are doing their best to give him what he needs. I don't really know their side of things so I am left to guess. We are really lucky. Sometimes though it feels like it could be much easier.

Imagine- rated R for language

Imagine you get pregnant and plan for months to welcome your new baby. Imagine all of the gifts you receive at a baby shower. Imagine how you decorate the perfect nursery. Imagine how you read all of the books and do all of the research to be the perfect parent.  Imagine how the world seems collectively shout with joy when your precious bundle of joy is born.

Now imagine you go to the hospital, fed up because the doctor won't tell you why your baby won't turn to your voice. Imagine now how at 10 months old the doctor tells you your child can't hear. Imagine how you feel when they tell you he will never read or speak.

Now imagine yourself sitting there........ and you say.......

Fuck You

Last night I was at a committee meeting for a dinner show at my son's school. He is a deaf kid mainstreamed after years at a state school. He is cast often in shows but this show will only be high school kids so my 7th grader will not be involved.

During the meeting the chair person asked me, " Mel when should we have the interpreted shows?"

After 13 years I am not having to defend for a brief moment. The people sitting at the table have no idea what it means to be deaf but they want the deaf community to come to the show and enjoy it. My son has become a matter of fact. My son who reads way above grade level and has a "voice".

Breath......... a shout to the past..... FUCK YOU

What Is Real?

I monitor my son's Facebook. To be honest I don't do it often. His friends are kids from his arts magnet  school and a couple of teachers. The posts are often creative and rarely worth worrying about . The fact that his friends are hearing and he is deaf doesn't matter online. He can express himself directly. I often feel his meaning in direct conversation is changed because of the communication barrier with his peers. If not changed maybe watered down. I could be wrong. With the power of written English he is free. He can join the casual chatting of typical hearing kids.  Here is an example of his freedom with the written word,

A girl posts- "Sometimes I wonder what's real and what's fake... I hope I find out sooner than later."


This is followed by really cool and sweet comments.


Then my Deaf son posts- " What is real? How do you define real? If you're talking about what you can feel, what you can smell, what you can taste and see, then real is simply electrical signals interpreted by your brain."


Yep, I am not really worried about Facebook. This is a place where my son can by heard loud and clear. 

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?

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".

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.

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.

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?

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|
noun 
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.

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.

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.

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.

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?

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.....