Mystery Solved

Yesterday I saw a picture posted on my son's facebook. It was of him and a Senior sitting at a table engaged in a conversation the hearing boy was signing. The caption read,

"I have no idea what they are saying"

That got me to thinking. Since my son started mainstreaming this year I am often shocked at how detailed his conversations are when there is no interpreter in sight. The only time he wants an interpreter is in class. Somehow during his social time he manages just fine with his friends. I do know several take ASL classes but many of the kids who hangs out with haven't. They learned quit a bit of ASL during the run of a show he did but the detail he reports doesn't match the skill level. As I stare at this picture I see something I saw during rehearsal. His cell phone was open on the table.

When my son is chatting with friends they sign and if they need more language they use the text screen on his phone. Brilliant! I remember in the beginning of the year finding tons of notes in his backpack. Now I rarely find them although he did recently come home with a conversation written on his arm. Yuck.

Yesterday the interpreter didn't show up for dance and it was no big deal the kids stepped in to interpret. Of course it is bad that he didn't have services for class but I am amazed at how easily he navigates communication at school. He still relies on notes with teachers when no interpreter is present because teachers text slowly.

So I used to think kids shouldn't have cell phones until they could pay for it but time and time again it has come in handy. We have unlimited text and the only time he uses the phone is when he pocket dials. Sometimes he phone will call me and I hear muffled voices and the swish of his walking. If it happens more than once in the span of a day I will shout into the phone,

"If you are standing next to Haddy tell him to stop calling me!!"

Of course no twelve year old wants the mom shouting from their pants pocket. I am his mom and part of my job is to embarrass him.

A Gratefull Reflection

Do you ever have days so good you don't want them to end? It is one hour and 19 minutes past my daughter's bedtime.

I just walked away from my kids. My son and daughter were hauling about six chapter books to her room.

Me,"Wait it is Stelly's bedtime, way past"

Haddy," I am reading her story"

Me," She needs to sleep now. You have a ton of books!"

Stelly ," He is my reader tonight and I get teenage books!"

*the books are tame chapter books but because they come from his room they are teenage territory*

Me, " You have ten minutes to read then sleep"

Haddy ,"OK"

Stelly, " Don't worry mom he will read one chapter every night"

I can hear my Deaf son downstairs explaining each book. Ten minutes has past. I will let this pass. They will think I am not noticing or maybe they know I am ignoring the blatant disregard of my rules. Yea, bad mom. I should be getting them focused. One on sleep, one on homework but the magic of my deaf son reading chapter books to my hearing daughter is just too beautiful.

Part Two- The Pediatrician

This is continuing my last post about a student in need of Early Intervention Services. I am breaking this down into several posts because I feel often it is the details that shift the outcome. Often I feel a child's services and identification gets painted with broad strokes when the answers are hidden in the details. I also feel there is a distance between the families, doctors, specialized service providers, and school teachers that waters down and sometimes renders the service useless.

The parents called the pediatrician who was very supportive and wanted to have them come to her office for an appointment. The tone I got when the conversation was relayed to me was she wasn't sure there was an issue but would help the parents any way she could. There was about a week waiting for this appointment.

They took her for the appointment and the news back I received was my student had a really bad infection in both ears and failed the hearing test administered in the office by the pediatrician. The parents were told they needed to treat the infection before they moved forward. They put her on antibiotics for two weeks and scheduled a return appointment.

Meanwhile they were referred to an ENT who felt the who issue was related to the infection and fluid and if needed they could give her tubes. They were told to wait for the infection to clear before worrying about a hearing lose. They were told that if this was the issue she should be just fine once the ears clear up. They see it all the time.

An SLP friend told me that is not always an effective course of action.

I am a parent who remembers the waiting. I continued to document my observations and teach her ASL. It was interesting to me that she never showed signs of pain in her ears. It was a surprise that the language delay was not a factor. Her delay was severe in my opinion and it may be an indicator that this has been an ongoing infection, hearing lose, processing disorder, motor control or something else hindering her language acquisition over an extended period. At this point it is all medical focused on the infection. The duration of the infection didn't seem to be a concern. I was thinking about the whole child. Regardless of the source of her delay she needs to catch up with her language if she is going to experience productive brain development. She needs language for typical social emotional development. She needs language for typical abstract critical thinking skills. At this point her expressive language hindered that.

So my strategy was to provide a natural language while we wait. ASL is very natural for her. It allowed her to participate. I was also worried that if there was a hearing lose that would benefit from hearing aides the sooner we know that the better. Of course we would have to wait to fit them given the current condition of her ears but that information would be so helpful. At this point I am not sure if she has any lose since she responds most of the time to conversation and environment. I want an accurate hearing test. I suggest they ask for an ABR.

I was also working on her social strategies and verbal confidence.

At the second appointment the parents were told the infection had not responded to the antibiotics and a stronger one was prescribed. The pediatrician washed her ears out which was very uncomfortable. She tells them it would be wrong to put her though more tests right now so no ABR.

When I talk about "breaking the fourth wall" I imagine life trying it out. Let the audience interact an become part of the play. Let the professional see the audience and really interact on a humane level.

Weeks have gone by. In a child's life it is more like dog years.

Next stop..... the audiologist

Part One- Breaking The Fourth Wall

I am a teacher in a small private Waldorf inspired preschool. In my class I use ASL and spoken English. My students are typical kids. I have no identified deaf or hh children in my class. Some kids come with social struggles or separation anxiety. I do have one child on an IEP and one who has speech delays. Before I joined this school I worked with deaf children. I am a parent of a Deaf child. That is a short back story. I believe that every child that enters my class will be successful.

Let's say I have a student that is 2 1/2 years old when she first joins my class. At first she appears nonverbal and under stress when asked to answer a simple questions. I know children have many different ways of entering new environments so this is not cause for alarm but something to watch. After a few days I hear her speak. Short one word demands maybe 3 words total. Yes-Yea, no, more-moe

When she plays she plays like a deaf child with no language. If she wants to maybe join some friends building with blocks she will push a block onto another child's body. She waits and observes before trying things. A new game in circle time is confusing but once she gets the concept after watching she nails it as long as it is not a verbal activity. Again no alarm but something to keep an eye on.

During structured group instruction she watches the teacher demonstrate the lesson then waits watching to see what the other children do before starting. Once she starts she is very focused.

When she realizes the sign language we are using in class is a way to communicate she warms up and seems excited. She soaks it up and begins to use it. She then feels comfortable using her expressive verbal English which sounds like a child with a hearing lose. She will give the shape and duration of a sentence but it is unintelligible. She drops the beginning and end of words. If shown several objects in a category she may label them all with the same word. For example a cow, sheep and chicken are all "peep". Anything soft like a blanket, tissue and towel is a "fuff".

As I watch her closely I see many things that just don't point to developmentally appropriate language.

I begin to become more concerned. The alarm is going off. I have been documenting my observations.

After watching her and giving her time to relax and gain confidence I feel it is time for a parent conference. This is delicate because my thinking is she has a speech delay and possibly a hearing lose. She looks like it could be auditory processing issues, motor control or hearing lose. It could be a combination or something else entirely. No parent want to be told you think their child may have a "problem". I want her to get a speech/ language assessment and a reliable hearing test. I want to find out what is going on then help getting the tools to support her.

The parents are visibly relived when I gently bring up the idea. They tell me they have been asking her pediatrician about this but were told she was within normal range. Of course this may seem shocking but most pediatricians have never had a deaf patient. She may not be deaf but this kind of speech delay screams for a hearing test. Most office visits are short and based on parent report. This family has a mode of communication and nothing to compare it to. So they report language that is family code as spoken English. This child may comes off as shy in front of the doctor and this is common with children this age.

So I suggest they contact the school district early intervention program for an evaluation, call the doctor and set up an audiology appointment and check out her ears for infection. I also tell them using ASL at school fosters communication and confidence. I tell them that it helps me decode her speech and model speech when I figure out what she is saying from her signs. I ask them to sign at home. They jump on that and go home to order books and videos. The next time I see them they tell me how great signing at home is. They have an appointment with the pediatrician.

So we are all on board and ready to get things rolling to help her. I am so excited the parents were so open. They are motivated to do whatever they need to to help their child. Why is it what follows is like herding cats? It seems pretty clear to me we need to figure out what is going on and move forward as a team to support this child. The thing is the people we will deal with next don't know her, can't get accurate information the way they operate and maybe, just maybe, don't really care much.

The thing is I do.

I hope it isn't true but from a parent's perspective that is how it looks. This time I am a teacher. This time I am watching from the outside.

I am breaking this up into several posts because I think the topic is important. It is just a reminder to me how families need a village and how sometimes the professionals are too far removed from the family to be effective. They may have their hands tied by policy. Sometimes they maybe are not qualified or have too many cases. Whatever the reason I want parents to know what can happen when they search for help. I want families who have been through this to know how much they have to offer.

"Breaking the Fourth Wall" is a theater term. If you google it you will understand where I am going.

Family Time and Weird People

This weekend has captured what deafness can mean to our family. Just small things that add up to a bigger picture.

I wrote this post on Saturday and my computer crashed while I was writing it. I lost half of the post so this is a bit random. I am going to go ahead and post it since I want to remember this weekend.

Last night my son had a modern dance show. It was really cool and as always I sit amazed watching my kiddo, who can't hear a thing, show off his finesse after 8 months of training. At one point his group formed a sort of mountain and a kid walked on them sort of floating and falling into the arms of another just as she reached the top. His teacher is so good she can make beginners look polished. She, according to my son, has passion for dance. That motivates him to work harder.

After the show I was at the table where they sell school stuff. Sweat pants, shirts that kind of thing. I wanted to buy him some pants but they only had sizes up from adult medium. I held up the medium and said,

" I think these are too big for my 12 year old. "

A high school kid standing next to me laughed and said,

" For Haddy? Uh, yea a little too big"

I held the waistband up to my neck and said,

"Really you think this is too big?"

I recognized him but was so surprised he knew I was Haddy's mom. Well, it is true all the kids at school know him.

He is the Deaf kid who can act.

Later Haddy walks up and I was signing to him asking if he wanted a shirt and I hear from the volunteer parent behind the table,

" That is your son? Oh my god, tell him he was amazing in the show!"

She looked really excited. I pause thinking that although he loves to dance he had a minor role tonight and maybe she was just impressed a deaf kid can dance. Then she gushed on and I realized she was talking about the dinner show theater he was a principal in. The conversation shifted for me.

When Haddy was acting in the show you couldn't tell he was Deaf. He was just an actor like everyone else. This woman really likes his work and his response was so cute,

" Thank you, thank you"

His face slightly exposes a pink blush. He gives her a shy smile. He is shy when praised. He loves the process of art but once it is finished he is done. He doesn't buy into getting the rewards for effort. He loves for people to like his work but hasn't found a comfort zone with praise. He just really loves the work of art.

Tonight, after the show he tells me he loves dance because once you start on stage you enter a different world. He tells me it is different from theater, it is more connected to your soul. I think , wow , he really is growing up.

This morning we woke up and with grandma , who is visiting for the dance show, and march off to a restaurant for food. We walk in as a hungry tribe. I am up front with my son signing and the hostess sees that. I hear her shout ,

" Are there five in your party?"

I jump a bit at her volume. She is shouting and very slowly.

I look to her and whisper,

"Yes five"

She looks relieved and shows us to our table.

We eat and after stop by a store. As we stand in line a mom and her three kids have no problem STARING I mean just staring at us. I feel like someone is watching me pee. This rarely happens, people usually look and when I make eye contact they look away but this family felt like they thought we were at they zoo.

My allergies are bothering me and I am not so patient. I did something I never do. I stared back. I stood there and stared at this family not flinching until we checked out and left the store. OK, I feel like a two year old. I will try and control my childish behaviour in the future but this one time it felt good. Later it just felt stupid. So I am not perfect.

So the last thing that strikes me today is we bought a game "Cadoo" I have been meaning to buy it for a long time. My husband hates board games so he went to the gym leaving me and grandma to play with the kids. So my son was quickly in the lead. I was second. My son pulls up a card. It says he needs to figure out the secret word

U+ (a picture of a knee)+ (a picture of a ear of corn)

I saw that and realized he would need phonetic tools. Get another card I tell him this is a hearing thing. He agrees and tells me he thought it was

unicorn.

Yea , someday I will learn.

A Moment of Gratefull Reflection

So I am working on a post titled "bully"

The topic itself makes me sick and I am popping into my blog in small intervals to write it. The draft sits, waiting and patient.

This post is a simple moment of gratitude.

I was just sitting with my son chatting. We were chatting about things he enjoys. Laughing. He was telling me funny stories.

I walked outside and steped on one of my daughter's pet snails. I feel bad but she is very understanding. She tells me her brother suggested she paints the snails shells to tell them apart.

Earlier my son was playing with his sister and he dumped glue in her hair, ugh. She signs at home even though she is profoundly hearing. Her signs were big and full of giggles as she trotted off to the shower.

My husband comes in from the vet and tells us our dog has an ear infection. Earlier the other dog was whining missing his brother and my son insisted jazz music would help and I stood by the classical music choice. Well it turns out according to my husband jazz is the dog's xanax. My son tosses a "told you" at me and laughs.

Haddy wants the computer to show his sister something I told him to wait so he went to her to hang out while I type this short post. "Hey let me read it first before you post it OK?"

"Sure" I reply.

I decide it is time to post and turn back to find my son. He is playing with his sister. They are laughing and so involved. So just this once I will not show him my post first.

At his age he may not understand my gratitude. Anyone who has children will. The thing I am so grateful for is my family. We are Deaf, hearing, clumsy, funny, messy and just not the norm but we are happy. We only communicate in ASL at home.

In Support of Finger Spelling

When I meet parents who are learning to sign I notice often they avoid finger spelling. I know that it is hard to learn and the receptive side can be taxing on the eyes but I would encourage folks to jump in and try. There are so many times where spelling is necessary. I don't mean spelling out whole concepts but there are so many things that need to be spelled. Serious if I, the worlds worst speller with the attention span of a rabid ferret, can do it so can you.

One of my son's first words was Elmo. He was about 12 months old and loved the little red monster. We didn't know a sign for Elmo and didn't want a home sign that wouldn't be understood by others so we would spell it. We were also nervous that if we made up a home sign we would find out it meant something else. I will leave it to your imagination the mistake we made with milkshake.

First he would sign a shape of the word, small closed hand shape, splayed fingers extended then closed handshape. Try it, first spell Elmo. Now do what my son did. See how the shape of the word is there? Over time he was able to spell Elmo. Before he could recite his alphabet he could finger spell several words.

I am not the type of person to just sit down and practice spelling. I am a lousy speller, yes I know this is a shock, so that is close to slow torture for me. I found ways to just add it to daily tasks.

So when learning to receive a word I would often look at the shape it made. Take a word like carrot. It starts small gets tall (double R) then small. I also don't label the letters C-A-R-R-O-T. Instead I sound the word out as I see it. Kind of like when as a kid I was learning to read. Sounding out the long words until it clicked.

Learning to express a word was still a challenge but I found I had plenty of opportunity to practice. In the car I would spell out every road sign, Restaurant names any thing I saw. As I got better I would turn on the radio to NPR and spell everything I heard. Of course I couldn't keep up but I would simply finish spelling a word and jump in when I was finished. I am sure I looked crazy to those who peered into my car.

I worked on a TV show and while we were rolling I would spell everything the actors said. Again I am sure they questioned my mental stability but I got faster every day.

So we finger spell a lot now because my son goes to art school and there are so many cool details about his lessons I would never get to hear about if he didn't spell it out for me. There are names of artists, styles of dance and visual art. Each art form seems to have it's own language so if I couldn't receive his spelling I would maybe loose out on sharing this with him in a natural way through casual conversation.

His sister will spell out a word she doesn't know a sign for. Then he can show her the sign and they can quickly get back to their conversation. I rarely hear her say, "Mom whats the sign for.....?".

We also finger spell about cooking, comic books, music and film. I guess my point is I would encourage everyone who is using ASL as a primary mode of communication to start finger spelling early because if you don't you may miss out on hearing about the fun stuff.

Like always this is not a research paper just my opinion about what works for us. My next post I think will be about bullies since I see a lot about that subject right now.

Psychics, Healers and Teachers

I don't know if it was because we lived in LA but for the first four years of my son's life we were mystical magnets.

It started off with a Native American healer touching my very pregnant belly. She quickly got a startled look and told me my child will be both exceptional and not what we are expecting. She refused to go into detail saying I wouldn't understand until he came into this world.

Then there was the the occasional comment about his aura from perfect strangers after he was born until about the age of four.

We might be walking down the street and a woman would stop us to tell us our son had a white Aura. Or there was the time a celebritie's physic wanted to give him a reading and she told me all of the spirit guides he had. She then mentioned that the celebrity wanted to give us money if he needed an operation. We had a few famous people offer that out of kindness. Uh no thanks but it was kinda funny at times.

We were told he was an Indigo child by countless people, well fine. I was given the book when over time I hadn't gotten around to purchasing it myself. You see I was so focused on learning ASL, figuring out deaf education and finding peers that wasn't at the top of the list.

I met an astrologer working on a show and she insisted on doing his chart. It was a hefty book that went into great detail about his personality and what to expect in the future. It talked about moons and numeric figures that were foreign to me.

Even people who had no mystical connections were drawn to him. I had offers for acting and modeling. No thanks I don't believe children should work for pay before they can read a contract.

I don't know if any of it is true but I do know we all have different perspectives and I enjoy learning about others beliefs. At the end of the day we just wanted a happy child regardless of what shimmered around his body or which animals were leading the way in some other universe. Really at the end of the day how would us believing it change anything?

Another thing I am told is my son is a teacher. This I know to be true.

When we moved he needed a dentist. I searched for the largest practice so they would have to provide an interpreter. I called Gentle Dental in Vancouver, WA and was told they do not provide this service. I tried to explain that by law they must. I knew that that receptionist was clueless and it was not her fault so I asked to speak to her boss.

The boss told me she would call cooperate to find out. When she called back of course she said sorry, they don't provide this service. I called the CEO's office and he never returned my calls.

I then felt I had gone through all of the channels to get accommodation and contacted the Department of Justice to file a complaint. After I got that started I contacted the Clark County Dental Association. I got a call back from a pediatric dentist who listened to my side. I explained how I couldn't interpret for my son because I was the mother and I couldn't do both. I told him that by law this company was too big to not provide an interpreter. I told him I was filing a complaint with DOJ. We spoke for about 45 minutes.

They next day I got a call from Gentle Dental. They wanted to schedule an appointment and would be hiring an interpreter.

I don't know if my son has a white aura but I do know he is a teacher.

Yea, we saw "Mr Hollands Opus"

One day I was working at my at gallery/studio space. Wait let me backtrack....

Before my son was even a whisper of a thought my husband and I worked in film and television. It was a great life for a young couple with no kids. My husband was working as an PA early in his career when we lived in Portland. He was called to do some days on "Mr. Holland's Opus". One of the scenes he worked on was the at the end when the music teacher dad finally gets it and directs a concert that his son could enjoy. The other scene he worked on we lived out in real life.

So one day when my son was very small I was sitting outside of my art gallery with my business partner. My son had been showing signs of hearing loss. Every day he seemed to be showing signs of hearing us but not the way we expected. It seemed selective. The waiting was killing me as I studied his every move searching for a response to the sound that I presented him. I felt so lost not knowing what was going on.

We faced the street and my son faced us in his stroller. A fire engine came crashing down the street sirens blasting. I felt a pain assault my eardrums as I looked to my son. He didn't flinch. Not a blink, squeak or response of any kind came from my sweet little boy. I quickly asked my partner if she saw that and just as I did another engine came barreling down the street assaulting my ears once more. As we both looked at my son he sat staring at us with a drowsy smile waiting for a nap. At that moment I knew.

I called his doctor. He told me to relax. He told me to stop reading so many parenting books. He shook keys by my son's head to prove his point. I couldn't relax and later we found out the truth. Well if you read my blog you know my son is really Deaf.

We always find it strange that in the movie a fire engine blares a siren with no response from the son and my husband was there during the shooting of that scene. The story from that point doesn't resemble us at all really but my husband only worked on those two scenes.

So there was an Asian, Polish and Deaf guy

Since my son mainstreamed at the beginning of the year at the art school I have been in a state of shock, a good shock. We have, as a family been invited into a magical world. My son has transformed from a bored slightly depressed kid to an emerging young man full of hope, talent and promise. We have had some challenges and I suspect that will continue but it is worth it. I have also been scared. Scared of the unknown.

So tonight I will venture out with my family to watch my son's high school friends do stand up comedy show. I will interpret. I posted about this before and to prepare for this I am chugging energy drinks. *well carrot juice and tofu but you get the point*

Hearing humor is different from Deaf humour but he loves it so of course I want him to enjoy this. To be honest the kids are so funny I am looking forward to it. This got me thinking about jokes and teasing. For us teasing is scary, it means someone gets hurt. It got me thinking about myself and how sometimes I am not really understanding the world my son lives in.

This is complicated so I hope I frame it correctly.

When my son was cast in a dinner show I noticed the kids were always joking around. They became so close that nothing that was different about them was a reason for conflict. What I mean by this is they have an intimacy that allows for a feeling of family. They have to expose themselves to be good at what they do so they are all vulnerable.

There were two boys one Latino and one Jewish who were best friends. They would tease each other and themselves about this.

My family jokes about hearing and Deaf stuff so that is similar but we would never joke about a group that we did not belong to.

This school environment has it's own culture that just happens to have kids from every walk of life. It is a lot like Deaf culture. Deaf people come from every corner of life and come together to share a culture. The kids at school are artists often from non artistic families. They are interested in things that set them apart from other kids. They are geeks or nerds to many but to us they are geniuses. They have a community and culture.

So here is where I am going with this. I was afraid they would tease my son about being Deaf.

This group of theater kids were so close and my son was part of this family. It turns out they don't view him as lesser or disabled. It turns out they admire his talents and enjoyed his company. It turns out he is part of the family.

It also turns out though that this cannot make them really know what deaf means yet. Because they feel so at home with him they also feel free to include Deaf into their culture and sometimes miss the mark. The point though is Deaf is now part of the school culture. The whole school includes it as a normal part of the community.

A film focus kid just wrote a script about a Deaf kid crushing on a hearing girl. He wants my son to act in it. Cool but in the script the interpreter hugs my son's deaf student character. Well not good. In the script my son's interpreter doesn't show up for work and then later tells the boy that she can't come the next day.

"Do you want a replacement she asks? "

"No he replies, it is OK"

So the story itself is good but the technical stuff is really bad. I will see these kids tonight and need to find a way to broach this.

*please don't jump on this*

Something else happened yesterday that showed me this new culture. I was instructed by my son to meet him after school. He has hatched a plan with a teacher and Senior to go to the Deaf school to teach some acting workshops. He wanted me to go and help. Cool. After the meeting I stayed to help the teacher. We chatted and cleaned up a project.

While we did this my son and daughter hung out with the Senior. The craziest thing happened that opened my eyes so wide I saw the light.

My son and this other boy were telling each other they were fat.

* OK settle down. So they both have flexible dancer bodies and zero fat. They have nothing against folks who have different body types in fact part of their tribe could be viewed as obese. These are kids who live outside of the norm in a rainbow tribe. Please stay focused on the point. *

What they were doing was so interesting. Using sign the other boy would say maybe, "You are so fat that when you are around the house it means you you surround the house" my son would come back with a clever response, " You are so fat that when you step on a scale is says "one at a time please". They were doing this back and forth for 30 minutes. They love comedy and improv so this was a moment of social fun for them not a moment of hate or prejudice. Sometimes my 7 year old would help the hearing boy with a sign but not much. This boy learned to sign from my son. The give and take was natural. They were laughing so hard it took over the room.

It was hard for me to see this but then I saw that there was no malice. What does this mean?

Meanwhile the teacher and I were sharing time as two parents enjoying mutual support about real life things as all parents should do. Think about that.

So after the joking stopped my son asked his friend about dance Focus. His friend is 18 and mentor to him. They became serious. His friend coached him with his signs. He calmed his fears like a big brother. It was much the same as the Deaf adult mentors my son has had. I think about that....

Oh, one of his friends posted this video and I think it is so funny. It is a school project that is "A letter to me in 10 years". He made it before he knew my son.Now there is the caption option. The problem is the new YouTube caption option doesn't even come close. The comedy is so English and the references are from classic movie lines. I love that things are changing but geez the captions ....... sorry Deaf folks my son was confused too. I had to go back and sign the whole thing for him.

http://www.youtube.com/watch?v=uTwQ2Nwg-7s

So I am learning that all of these kids expose themselves with their fears and weakness and learn from each other. They don't judge their differences. As a result they have a community. As a result they become family. what if we all did this? I think about this. What if?.....

Anyway, time for dinner and to get creamed at an acting game by my kids. Then off to the comedy show.....wish me luck.

This blog is very personel and I try to be frank and honest. Some of the topics are not easy to share but I found in our travels people are so nervous about being judged we don't get the gift of learning from others.

In order to respect my son he reads each post and has the final say in what gets posted.

Bumps along the way

So I am sitting here thinking about the struggles we face having a Deaf son. Here is a snap shot of the mountains we climb just to get through a typical school day.

You cannot imagine the trials of the first months of school this year. Before the first day we made sure he had all of the assistive gear he would need to manage his mainstream school environment. I tried to future trip and think of every scenario that he might encounter. We loaded up on batteries for all of his technical needs. We carefully analyzed his nutritional requirements and acted like Ninja warrior preparing all of the necessary equipment. We stocked up on all of his communication and protective needs. We were ready to roll.

Well despite our efforts it was a mess. The expensive scientific calculator with backup batteries we purchased for his advanced math class was lost by the second week. The phone we got him for safety was taken from him for texting his new friends during class. His technical needs were a bust. When I went with him to get his phone back I am told most sixth graders do this not just the deaf ones.

I bought reams of paper, folders, pencils, pens and notebooks for his school work but he continued to misplace things and procrastinate on his assignments. He had all of the supplies and skills needed to communicate in English but needed to learn how to schedule and organize. At his new school he has tons of research and art projects even in math. This is much more challenging then elementary school and that along with rehearsal schedules and his social life he has been overwhelmed at times, but so have the hearing kids.

I had purchased a tons of little plastic containers for his healthy lunches I wanted to pack. Instead of eating my offerings with reverence my son lost his lunch box three times at the start of the year. He also discovered the vending machines. I refused to be defeated so in perfect helicopter mom form I purchased a super high tech backpack with a built in thermal pocket. He liked this option because they don't have lockers at school and the kids carry way to much around all day. This worked well except he would toss his backpack down and all of the containers would break. I solved this by buying a metal lunch container. Problem solved.

We bought him a very cool coat to keep him warm and protect him from the elements. It was a black snowboard coat and he loved it. All of the kids at school had coats like this! Well he lost it the second week of school. I took him down to lost and found and dug through the mountain of dark coats that smell of teen angst. Wait, other kids loose their coats not just the deaf ones.......

We went through four coats until I finally invested in a very loud red, black and white coat. It became a signature piece for him and everyone knows it is his. If he looses it someone will always return it. The custodian told me to write his name in it even if he protests. The sixth graders always loose their coats I am told not just the deaf ones. Done. Things were starting to come together.

His school has a lot of art projects assigned. Without fail he would go to school with his work. I would text him throughout the day reminded him not to loose it. Sure enough by last period when it was due he had lost it. I am told by the staff he is very social and not focused on his studies between classes. I am also told most sixth graders are learning how to manage the rigorous demands of middle school not just the deaf ones. So to help him out I bought a bright blue portfolio and wrote his name on both sides. We gave him a caribeaner clip so it attaches to his backpack, problem solved.

So in many ways the areas we struggle with are not related to deafness. I was nervous about his crash course on the hearing world after being at the deaf school but none of my fears were realized in the way I imagined. Upon reflection I wish I hadn't been such a helicopter mom in the past. I am trying to improve with my hearing daughter but it is a hard habit to break.

There are real challenges for him because he is Deaf but they often frustrate me because they can easily be fixed.

Example

Interpreted live entertainment. Often we go to a play or event and even though there is an interpreter they may be standing in the dark, too far away from the action or only one is available for a play with a large cast.

Example

During the presidential campaign I wanted to share some videos online on Obama's site. No luck, no captioning. Lack of online captioning is a pain.

Example

Deaf role models in the media. Often we see deaf people portrayed as victims or not remotely like my son.

Example

Not being able to blend his world. He has a complete life in both the hearing and Deaf world but they rarely cross.

He has a lot of social activities with his hearing friends but when I ask him if he wants to invite his deaf friends he doesn't want to. It turns out it the two times he has tried it was awkward. His school friends are into different things he tells me. It feels forced. He can't relax.

I have heard many deaf people tell me the same thing that they don't feel they really completely fit in either world. This is true for my son. He is culturally deaf but when he started to mainstream at the arts school he had a whole new culture open up for him. It changed him and he blossomed with all of the opportunity. He still embraces being deaf but he doesn't spend as much time with his community. I am working on some plans to change this.

A good example is the play he was in. It was interpreted for two performances. I went to one with three of his teachers from the deaf school. Two are deaf. The problem was so odd. My son didn't need an interpreter so his regular qualified interpreters were doing it. A hearing person decided our seats and though it was perfect because we could see the whole stage from the back but we couldn't see the interpreters up front from our table so I interpreted it.

Example

Critical mass. There is a small population of kids who are Deaf in our town even though there is a deaf school. Class sizes are mixed age because of this and still really small. The kids don't have the luxury of picking friends based on mutual interests.

Example

Living under a microscope. We picked a path that is not really popular with hearing parents and because of that folks are always watching my son. I feel sometimes if he stumbles it will be blamed on our choice. He is also called upon to be a role model but other times told to hold back. In the past I have tried to hide him from this but found that people will come up with their own ideas about us. sometimes people judge us because we didn't implant him. Sometimes people judge him based on my actions in defense of our choices.

So...

That is one reason I blog. If he is going to be looked at because of his Deafness I want our side to be available.

So big picture these are some areas I would like to see improvement in. Sure there are others. What I like to keep in mind is my son is happy. I have friends with really big challenges with raising their hearing kids. It is just parenting plain and simple we all have bumps along the way. I just try and do my best to not be the person creating the bumps and sometimes I fail. Most of the time it is just a parenting goof and not because he is Deaf. The great thing is most people involved in his life are so fine with us. His deafness is just as important as the color of his hair. (which needs to be cut by the way)

A Secret

I admit there are times when I have done something because my son is Deaf that I may not be proud of. There have been times when something came up and that fact that he was Deaf helped a situation for our benefit.

When my son was 2 1/2 I was working on a television show that was a 42 minute commute form my door to the stage. One day I got a frantic call from my husband as he fled to the emergency room. My son had been playing inside and my husband needed something from the car. He didn't want to go through hassle of dressing my son and getting him to stop playing just to grab something outside real quick so he quickly ran out shutting the door behind him. He got what he needed and ran back to the front door. He opened it fast and with force only to find out my son had gone to the door looking for daddy. The door knob landed squarely in his forehead sending him flying.

The injury was so scary to both parties involved my husband grabbed a neighbor and headed for the emergency room. He brought a friend so someone could sit with my son in the backseat and sign to him.

After I got the called I left work and drove as fast as I could to get to the hospital. It felt like the longest 47 minutes of my life. When I arrived I ran down the halls to get to my son. I saw my friend sitting in the waiting room with red teary eyes. Finally I had reached the desk and asked for my son. This is what I was told,

" You can have a seat over there your son is being examined."

"But I am his mother I need to be with him"

"Sorry only one person can go in the room with the patient."

" He is a small child he needs his parents."

"Sorry, hospital policy.

This is where I told a bit of a lie,

" My son is Deaf and I need to interpret for him. I am here as his interpreter and he has the legal right to my presence. "

I got in. Sure my husband could have dealt with this alone but really would you just sit and wait? I convinced this woman by tossing around legal accommodation jargon she new nothing about. I bet the policy was set up for a very good reason but that was not important to me.

He had an x-ray and all was fine. I went in with him and they tossed a lead apron on me while I told him to sit still. I would lie again if I had to do it over. The hospital suffered no harm and my baby had his mama with him when he needed me.

The other time I am thinking of was when he was about 18 months.

We were traveling and on the last leg of a very long trip home. The airline had us on standby after being bumped from another flight. We had to stay at one gate and try to get on each flight. My husband was in charge of the line and I sat with my son.

My son was done. He had been stuck at the airport all day and was a soup sandwich. He was a very easy kid as long as he had communication, food, sleep and clean diapers. At this point we had no diapers left, I was too tired to entertain, we were living off of Goldfish crackers and he hadn't had his nap. This is a volatile combination which was about to become a world class tantrum. Trust me if this would of happened the world would have let out a collective scream because my son could shake the universe with his wrath. So we lied to save the world or at least the last shred of sanity we had and to save the terminal from certain doom. Here is what happened.

I was watching my husband inch up the standby line. As he got closer I saw others walk away with grave faces. This couldn't be good. He looked over and signed, "They don't have enough seats." I exploded I am ashamed to say. I replied with the most angry signing to date. My face full of fierce aggression I shot back," I DON'T CARE! GET US SEATS! DO WHAT EVER YOU HAVE TOO WE ARE NOT MISSING ONE MORE FLIGHT!!!!" Well I am sure my language was a bit more colorful but this blog is rated G.

So what happened next is so interesting to me. The woman at the counter had seen this exchange. When my husband walked up she had a note prepared asking to see his tickets. She then silently worked her computer and handed him three tickets. We got on the flight. We did not clear up that we were not deaf.

We lied.

I send my apologies to the two women I lied to. I know they were just doing their jobs. I also send my gratitude.

Deaf is only 5 percent of me

I am prompted to write this post by a conversation I had with my son tonight. I am going to be frank about it and it may offend some people but it is honest and just the perspective of a 12 year old kid who is not jaded by the politics of being deaf. In fact he is so at home with himself it does not surprise me when I see what he has to say about the subject. The funny thing is it makes me nervous to post it because you may think poorly of my son but I feel it is valuable. My son on the other hand stands behind his belief but would hesitate only because he wouldn't want to hurt someone's feelings.

The conversation started with a question I asked him about cochlear implants. I wanted to know if the kids at camp had any problems because of their implants. He told me no and then that lead us to the first time he saw one when he was little.

His said when he was really young he saw a girl had one and he thought it looked like a steering wheel of a car. He didn't understand why a girl would want something like that on her head. Later he saw another and he asked the kid what it was. The kid popped it of with a flourish and shocked my son not offering any clue to what it was. He was laughing telling me this and said later he got it when I taught him about it.

So this all spins around to a topic my son has strong opinions about. No, not implants, about that he doesn't care either way. The topic that drives him nuts is ASL poetry. This is an subject he happens to be interested in . He has been mentored by very talented Deaf adults and enjoys this art form for its beauty and clever execution. He is also a good ASL storyteller and has respect for the art of ASL. He sees it as a way to entertain and at times to provoke thought.

*note I have condensed and translated to the best of my ability. When reading this remember he is a dance and theater student so it is quite the performance*

He starts out telling me it drives him nuts how many young poets are so self pitying and dramatic. He shows me a comic example, face creased with pain his flings his arms in dramatic over acting and signs "deaf", slowly swaying from side to side using the usual phrases we have seen." Caterpillar to butterfly, lonely , confused, find ASL, my heart broken , confusion then light". He slowly and so dramatically falls to the ground.

He then gets up and tells me ,

" I don't get it since when is Deaf a big deal? Why do we all have to stand around being so upset and using it as a way to get people to feel sorry for us? I am only 5 percent deaf *meaning his deafness is only 5 percent of who he is*, it is just a little problem. I do whatever I want and it has nothing to do with being deaf.

We need to put some art back into kid's poetry. I wish these kids would study the craft and move beyond all of this drama. "

* at this point realize he has not had to go from being oral to sign, we have never really put much emphasise on his deafness, he has never been bullied, left out or had problems communicating with us so his comments are not cruel but just real and valid from his experience*

" I want to see more interesting topics and it wouldn't hurt to make me laugh once in a while. I get so bored with all poor me stuff.

I think if we want to focus on Deaf it should be funny or to fight for our rights with strength when preforming"

That is the part of our talk tonight that I wanted to share. There was much more and I will leave you to guess how I followed up with him on this or what my opinion of his comments were.