Wednesday, September 30, 2009

A Brief Thought On The Behaviour of Deaf children

If you are raising a deaf child have you ever experienced this behaviour?

Your four year old throws a tantrum, shuts his eyes and screams at the top of his lungs? You can't communicate

Your three year old is so frustrated because she is not getting her way that she screams a cries so hysterically you can't calm her

Your child grabs toys from other kids and can't seem to share

You don't understand why your child disrupts circle time at school by rolling around and commenting at inappropriate times

Your child is loud when eating and seems to not notice his plate crashing with his fork

Your child doesn't understand how to take turns in conversation and will walk away mid sentence

You can't get his attention easily and he seems to pick and chose when you can engage

When your child is socialising with hearing kids he gets aggressive

When you drop him off at school he screams for a full hour shouting at the teachers wanting to go home.

Well if the answer is yes, take a breath and calm down. Next tattoo two words into your brain "Be Consistent!"

The examples I listed are not from deaf children but just a sample of the behaviour I have witnessed teaching typical hearing 2 1/2 - 4 year olds in a classroom setting. We are told our deaf children will have so many problems learning to behave or really be human and yet the behaviour is not compared to hearing kids. If a child has consistent access to their native language from a very early age and consistent discipline I have yet to be convinced that this stereotype has any validity. What I have seen is parents who don't have tools. What I have seen is parents who have been preached the gospel of delays, disability.

For example hearing kids will throw tantrums where they are screaming and having a fit and don't hear a word you say. The parent who is consistent may chose to let the child freak out then talk about it after followed by a consequence. What is the difference? Both parents have to wait, both children can't communicate can't talk while in the midst of a meltdown.

With my son he tried on all sorts of behaviour but I never saw any difference from my hearing friends hearing children. If you give kids the credit they deserve for testing boundaries with the skill of a CIA agent you will see you can't blame deafness for the behaviour. If you do not remain calm and consistent you may see the behaviour worsen. If you don't share fluent language it may worsen and if you are always looking for the weakness you have been preached you are doomed. My thought is stop using deafness as an excuse.


My son was mad about something last summer and he decided it was a good idea to storm off while I was talking and slam his door. I waited patiently for him to emerge from his room. I was calmy working on something. He tried to start the argument again, I ignored him continuing my work signing only once "consequence".
When he came out again, I explained it is ok to be mad but not to direspect me. I also gave him a consequence that sent him back to the tech dark ages. Lesson learned.

Tuesday, September 29, 2009

Blocked Again

Everything I write in this blog is for my son. Comments are so important because he needs to see why this part of his life was so big. So I welcome your thoughts. As he grows he needs to know what the world at large is thinking so he can create his own opinions. At times I am a bit harsh. This is because at that early stage we did not feel our needs were met. Our family was not the typical model.

I will not parade all the research or case histories that lead to our choices but rather provide snapshots of the first years of his life as we saw it. We made a point at a young age to remove the medical label of his deafness. We chose to provide him with an environment that did not shelter him or block him from the world at large but rather give him the tools to enjoy life with confidence.

About 10 years ago.....

Every day it felt like we were learning something new. We attended conferences and workshops for educators and parents. My husband and I would split up so we could get as much information as possible and compare notes at night. At this point we were not sad or nervous but really excited. We saw our son blossom and the experience of parenting was a blast. The tools we were taking away helped to navigate areas that were new.

Our home center classes were a bit of a struggle. During the last part of every class the children would go out to play. The lead teacher would then gather the parents and address different "issues" the parents might be dealing with. The "issues" usually centered around "expected" delays with development. The only problem was my son was showing no sign of delay other than speech. If the teacher said the children would be more aggressive because they didn't have the same social cues or incidental information as a hearing kid I would offer advice that worked for us. My opinions were not welcome.

One example I expressed that if a child has a native language and a native language peer group there is no reason the expect delays. In our case the peer group was CODA and deaf children of deaf parents. Incidental language is available if the adult who provides care uses that language and make sure the child has the opportunity to have access to it. The child also benefits from watching adults have conversations that don't involve them. My son had no problems socializing, period. So how could I be wrong? So my idea was rather than pointing to pictures of sad faces why not use the native language to engage and redirect behavior?

What if a child who speaks Russian plays with a group of English speaking children? Do we expect the Russian speaking child to exhibit inappropriate behaviour because he doesn't know English? It all seemed so simple but the teacher would always respond to my comments with guarded irritation and never discussion.

Usually it went something like this, " Well that is great that is working for you but it is not entirely true what you are saying". Sometimes they would say my son was an exception. So the message I was getting was the teachers didn't believe the children could function without severe intervention. Upon reflection I can see this may have been threat to their entire reason for working in the field. If everyone did what we did they would have to change the entire system. Not to mention there was not one staff member who voiced off during the the entire time of the class.

Parents would be shocked to see how well he was doing, which was typical for his age. They would often ask, "What are you doing?" I would tell the during the free play time and give them my phone number. After that they would avoid me. I found out over time that the teacher was steering them away from me. Over the 2 years we attended that class I would find out through different sources that she would tell parents I was in denial, off balance, in need of education and resisting intervention and in one case she told staff from a different program to avoid me because I was crazy. The problem here is he was still little. The parents could only fantasize about his adult outcome.

There was a mom who did call me. I suggested she ask for a deaf mentor with a similar hearing lose to give her an idea of what it will be like. I told her that someone who depends on ASL is very valuable even if her son became an oral super star it helps to know what being deaf is from the perspective of someone who lives as a deaf adult. He was already surrounded by hearing people and one staff who was oral but proficient in sign so he was getting what the hearing world was like.

They assigned her the aide in class who was raised oral and signed. This seemed so safe to me. The mom could just sit and chat with her and be reassured that her son would follow her path. Well this aide had a different hearing lose. When the mom called me to tell me I was straight with her. She had wanted to have the same service as me. I told her it would be easier to get that if she redefined the criteria for her request. I told her to ask for a Deaf adult who relies on sign language and has some college education.

The next home center class I was asked to stay after. The teacher and aide sat me down and read me the riot act.
"You can not talk to parents, it is too damaging. Sallylouwho (I replaced her name) is deaf and your comments are very hurtful. I have a -insert education back round- and years of experience. "
I pointed out the Sallyouwho had a different hearing lose and she didn't pick up ASL until later than life. I had no intention to hurt her feelings or deny her hearing lose but the needs of the family were the important issue. I didn't feel the needs had been met in this case.
The aide broke into tears right there and told me she was deaf and her mother worked really hard to help her speak.

I can't tell you how many times I have heard that statement. I imagine mom sweating over hours at the dinner with drills and frustration. I am always wondering aside from the guilt the kids carry do they ever feel the same gratitude for dad?

She was so emotional it became a case of me the tyrant pain in the ass mother who was attacking poor Innocent deaf people.

The teacher then continued to warn me and blah blah blah. She did not once open the topic to discussion.

I was so shaken and had a meeting with a teacher from the charter school upstairs after about some fundraising I was doing for the school. You see the charter school connected to the home center was going Bi-Bi so they welcomed us. As soon as I saw her I broke into tears. She sat with me and let me vent. She would latter become a very supportive and wonderful friend.

About three years ago.....

We always taught our son his rights. One right is public accommodation which in his case often means an interpreter. His CODA friend wanted him to join Boys and Girls Club Summer program. His friend's mother requested an interpreter for the parent orientation. They didn't provide one and didn't bother to tell us. So in a nut shell we found out my son could join but they wouldn't provide any accommodation. I called the DOJ and they told me it would take about 3 months to investigate. That was exactly how long the program lasted. The thing about my kid is when I doubt him he always proves me wrong.

I sat him down and explained the situation. I was going to file the complaint and maybe they would settle it fast. He said no, he wanted to join now. I said how? He told me that was their problem. He had a blast all summer. Nothing phases that kid except cleaning his room.

Friday, September 25, 2009

The Best Of Both Worlds

Today was really exciting so I thought it would be a good idea to share one story of how we became a bi-cultural family. It is a bit hard to write this blog at times because for the first three years it was like a roller coaster. For the most part it was really fun and exciting but there was a lot of frustration with the professionals. Our life now is pretty stress free when it comes "deaf" issues. In fact many deaf friends told me not to worry about him back then. They told me he would be fine because we were doing the right thing. I was still stressed because I could see if the schools would just do a few simple things I knew he would be fine. More on that later today is a wonderful day.

About 11 years ago......

Our deaf babysitter was fantastic. She was very open to helping us meet people in the community. When Hayden was just about 12 months she invited us to a child's birthday party. The parents were deaf as was their child. Of course we said yes but I am embarrassed to admit we where terrified. The only reason we were invited is because of our son. We didn't know anyone other than our friend and our signing was still awkward. When we arrived we sat on the floor of their apt. We didn't know what to do. Everyone was having fun. The adults were all engaged in animated conversations which were so fast I had no idea what they were talking about.

Soon folks started introducing themselves and we relaxed. They signed slower with us and made us feel so welcome. What stuck me the most is several of them took the time to share their stories and back round. This was a private party with friends and they took time away from it to encourage us and make us feel comfortable. On of the families had a son the same age as mine. 4 1/2 years later when we moved out of state we met that family again. They had moved to the same town and to this day the two boys are best friends. My son is Deaf and his friend is a CODA.

I wonder if hearing people in general would do the same thing for a deaf couple with a hearing child at a party?


So my son has been invited to all three call backs for a play at school. The last one was last night and the director asked to speak with me when they were done. At this point there were just high school kids and my son who is a sixth grader left. I thought she wanted to ask me something about deafness but she didn't. She said she really wanted to cast him but they never cast sixth graders because of the rehearsal and training schedule. She asked if I thought he could manage the play and school. I told her he is a really hard worker when it comes to acting. I am so proud of him! He found out this morning when it was posted on the theater Call Board that he was a cast member. It is 2 weeks into school and he knocks one out of the park.

He told me he got the part when I picked him up from school. He is really excited and can't wait to start. We were headed to his old school, which is a deaf school for home coming but first we stopped at home to get a snack.

My son was attacked by a squirrel.
He was walking to the front door and I was a few steps behind with my daughter trailing behind me looking at her fairy house off to the side of the walkway. He began to walk up the steps and let out a blood curdling scream and threw his backpack. Something flew past me just inches from my head. It was to heavy to be a bird, I screamed and tried to grab for my son. My daughter screamed and ran away from the house. I yelled for my daughter and asked my son what thing was. It was a squirrel. It was on a window in the little arch of our doorway. It freaked out when we arrived and jumped from the window onto my son's back and flew past me. So we took a breath, grabbed a snack and headed to the deaf school.

The really cool thing about a state deaf school is over time it feels like family. Our school is small and connected by generations. I am friends with the staff and children. We hadn't seen many of them since school got out last June but have known them for almost 8 years. It was so much fun to see my son among these old friends. I got a kick out him teaching the kids the cha cha. He had learned this dance the day before at school and really loved it.

I got a chance to catch up with friends and talk to the kids. I met a deaf mom who had a hearing daughter at my son's new school so now there is one connection to the deaf community bridging the two worlds. My daughter also enjoyed seeing her friends and both kids were running freely for 3 hours during the game. Since we all know each other there is a feeling of safety allowing this.

When we got home he caught me up on the kid's gossip and news. He didn't show any interest in going back to school there but he really loved hanging with his peeps. I realize he is growing up and his path right now is in both worlds. He is happier than he has been in a long time. He can pursue his interests and thirst for learning and still be part of the Deaf world.

Thursday, September 24, 2009

Time To Get Schooled

About 11 years ago......

We began to slowly get connected to people. Sometimes through Early Intervention and sometimes by chance. Out in public we signed voice off to each other and we often were approached by people who signed deaf and hearing. These encounters were always positive and sometimes funny. People who didn't approve of us would sometimes make loud comments about that poor child. That really only happened a few times.

When he was about 14 months I was chasing him around the kids section of a books and he was asking me something. A man walked up and asked if I was deaf. It always started with that question which startled me because I didn't think I was fluent enough to look deaf. Turns out he was a preschool teacher at a deaf charter school. He was also deaf. We had a great talk and one lesson he taught me was to sign everything no matter how insignificant it seemed. If I asked my husband where the keys are sign it, if I said thank you to the grocery clerk sign it. It was so obvious but I hadn't thought to do that. I am sure strangers thought I was crazy signing everything as they talked to me not knowing my baby was deaf. I rarely mentioned that fact because it cracked me up to watch them politely try not and glance at my hands. That man later became one of my son's first teachers. He was also one of his best.

Our caseworker told us about the classes for children 0-3 at the local schools. There we could meet other families, learn more sign and parenting instruction! The one nearest to our home school was in South Central at a deaf day school. All I heard was deaf school and told her to sign us up. I was working so my husband took him. He told me there were several families most spoke Spanish. The staff consisted of a lead teacher, hearing, support staff , one hearing bi-lingual Spanish and English and one hh.

He said it was fine but they wanted all of the kids to wear FM systems the whole time. The kids sat for a story for about 10 minutes but other than that they played. My husband was curious about what they were hearing so he wore it while the kids were playing. He heard about someones husband, toilet flushing and odd enough what sounded like a fax. Hayden hated wearing it and I thought it was not being used properly so I told the teacher. She treated me like I was this poor pathetic mama in denial. I remember having a struggle from her but then oddly enough all the FM systems were eventually removed.

Then it was my hiatus so I could go. We entered the room and I introduced myself. The teacher seemed nice but on guard. Children were engaged at different activities and my son quickly joined in. I noticed people were not signing. They only signed when talking to a child.

I was so excited to connect with the other parents. I asked the Spanish speaking aide to help me. I met some moms who seemed startled that I was talking to them. Looking back I was maybe a bit too excited.

The lead teacher gathered the children for story time. She pulled out a book and proceeded to simcom the story. It wasn't even simcom really because if I were translate her signs it dropped a lot. The story really didn't make sense. Some of the children got squirrely ( I imagine the ones who had a profound hearing lose would find this boring) and she seemed irritated.

After story the children went outside to play while the parents were given parenting lessons. This is where it gets a bit sticky ............

About 3 years ago...........

My son was up for 3 yr evaluations and an IEP. It was a constant struggle to get the deaf school to provide ASL instruction. Every year I would insist on ASL goals and every year they would try to piece together a curriculum. He had been in school for 4 years and never been taught ASL as a language. By this time it was more political than anything else. As for his other goals, it was more of a formality. I was concerned about his writing because it tends to be a bit ASL but other than that he was doing really well and in some areas above grade level.

At the meeting was the ASL specialist who is deaf and several hearing staff members. The most critical person was this deaf staff member because his ASL goal was my main concern. 10 minutes into the meeting a woman walks in and sits down. Up until that point the meeting was signed with no interpreter because there was no need for one it wasn't requested. I looked at her and asked who she was. She told me she was from the school district and she was there to observe in case Hayden needed to mainstream ( the deaf school was a state school so he wasn't even registered in the system) . I asked if she signed. No. I told her we didn't have an interpreter so she wouldn't understand and Hayden wasn't mainstreamed and I didn't understand why I wasn't told she would be there. She told me it was standard practice. Then something very strange happened.

The other teachers started to scrambled to accommodate her! The first idea was to cover the ASL goal so the deaf teacher could leave. The deaf teacher said that would work. I said NO. She was a very important part of the meeting and this other woman had no reason to be there. She could sit and watch but not at the expense of my son's IEP or the deaf teacher. My son also attends his IEP meetings so this was even more insulting. I stood my ground and suggested she leave and perhaps if we ever needed her services we would contact her. A hearing teacher offered to interpret and she stayed. Looking back I still don't know why she was there.

My son is so excited at his new school. He has more friends, he joined the ASL club and had his 3rd call back for a play. There are some things that we need to tweak but really it is amazing.

Wednesday, September 23, 2009

Now We Are Getting Somewhere

About 12 years ago.......

So things were going really great at home. He was signing and very happy. We relaxed but wanting more help. Our case worker was trying hard to find what we needed. She told us about a parent panel at House Ear Institute and we jump at the chance to attend. The problem was there was no childcare so we needed a babysitter for the first time. We had made the decision to never leave him in the care of someone who didn't sign. Someone deaf was even better. We asked our for help with that and she came back with one name of a college student who watched a deaf mother's child in the program. We didn't have time to really interview her so we contacted her on our new tty and set up time right before the panel to get to know her. I was terrified to leave him with someone we didn't know. She was very nice and turned out to be a very generous lifeline as well as friend in years to come. Her dialect was East coast so we struggled through our first meeting but felt at least a little more calm about leaving.

The thing about panels is you need to know the motive of the host. This was our first and it was a real train wreck. They had invited one oral deaf girl on her way to college in the fall and a young adult signer who was the custodian at the Institute. I was shocked.

The girls mother told her story. She had worked with her daughter for years using every free moment to improve her speech and hearing. It was a lot of hard work for her and she had to give up her interests but it was worth the outcome! Tears come to her eyes when she explains she sent her to private school where she did very well and was just accepted to some big name college!

The young man told his own story through an interpreter. He was raised with some oral training but mom was too busy working for it to take. He went to a special program in the school district and picked up sign language and got this job at the institute. He had friends.

Then it was time for questions. It felt like all the audience parents were going to run up and hoist the oral girl into the air a run a victory lap.

Then she spoke, here is how it went
Q. What is your hearing lose
A. Profound

Q. What do you do for fun?
A. *something off topic mom steps in to help her understand the question*
I read all the time.

Q. *me asking* Are you involved in any activities at school or in the community?
A. I like my classes

Q. *me again* I mean like sports or clubs
A. No not really

the room settled a bit, my husband and I were signing low below the backs of the seats in front of us. We were both freaked out by that last answer

Q. What are your dreams for the future
A. I pray to god that I will hear better and speak better

She really said this. The last question I remember was about how she got into college and the mother answered it had something to do with her deafness. I don't remember much more because at that point I was so freaked out and wanted to run home and check on my son. We left there really convinced we would never go oral.

In the months to come...

So we went to every panel, workshop and conference we could find. Many were informative none as crazy as the first one. We noticed a pattern, all the the people that were chosen were typically the most successful not representing the majority. My son has also been called to service in this way many times. For example when the newspaper wanted to interview a child from the deaf school we got the call .

The one thing that sticks in my head with bright golden arches is the McDonald's syndrome. It seamed as though almost every new parent suffered from it. This is how it goes, a speaker is finished and opens it up to questions. A parent is called on and says something like this,

"My son/daughter belongs to a hearing world he/she lives in a hearing family. How can he/she survive without speaking? I just wanted her to be able to order a hamburger from McDonald's."

WHOA...someone hit the breaks please, when did McDonald's become the cultural icon for normal? When did it become a benchmark? Why always McDonald's? When did it become a goal to put toxic materials into our bodies? My response later when I was a panel member goes something like this,

"Well I have never met a deaf person who can't order from a restaurant but have met some who can't read Steinbeck. Our concern is that our son is literate giving him the freedom to pursue a higher education. "

By the way my son watched Super Size Me and won't step foot in McDonald's and he loves Steinbeck.

This is just my perspective at the time my child was still very young. I am sure there are many who had a really different experience.

Tuesday, September 22, 2009

Small Gifts

About 12 years ago.....
This is just one of my thoughts on a much larger topic. It is just my perspective at the time my son was still a baby. It is simply something that I was feeling. It really complicated and I can't go in to great length in one blog.

Our case worker really tried hard to help us. The staff had never met a family like ours and didn't have the tools to really fit us into the system. Our requests seemed so logical to us so it was a bit of a shock when it didn't just happen.

We had asked to meet other families. I had imagined how happy we would be when connected with all the other parents we would have an instant support system. I had imagined us all working together to raise our beautiful children, learning from each other and enjoying some laughs along the way. Turns out this is not entirely in the cards for us.

My thought is maybe one problem is parents of deaf children are put under tremendous pressure to be perfect. You must make the perfect choices and follow through without fail. If you don't do this you have failed. In this model of perfection you are told you must start right away and if the child is not perfect in 10 years it is your fault. While you trudge along confused and scared you realize there is not one kind of perfect. You choose the perfect that seems closet to your family even though at time it feels like you are cramming an elephant in a pin hole.

People from the other perfect choices feel the same pressure and the belief in the perfect outcome makes them defensive. The don't venture out to consider the points of the other camps because if they do there might be a crack in their belief.

Professionals usually hold on to one belief and Shepard parents would follow them. This creates a divide amongst parents and worse the children they are all trying to help. We had one professional actively tell parents we were crazy and not to listen to us. Other professionals that agreed with us applauded our efforts and gave us support.

One example of this divide is a family that lived a few blocks away. We saw them at the park and asked our case worker if she could connect us. The answer was no the mother was afraid if her son saw ASL he might stop talking.

The community also plays a part in this division. There is a long history of oppression of deaf people. To our new parent eyes it was so hostile at times.

So when we asked to meet other families we soon learned it would be a dance of philosophy. We did receive a small gift in light of the numbers of families who were in the system. One day we got a call that there was a family that had just moved to our area. They had a deaf daughter one year older than out son and the were supporters of bi-bi! The first time we met felt like a first date. I was so nervous given the other encounters we had. Within 30 minutes we were laughing, grumbling and feeling a weight lift as we shared our stories.

I am left to wonder why it was so hard to find a tribe.....

Monday, September 21, 2009

Never Let Them See You Sweat

I am going to skip around a bit because tonight I had a mama moment. I was again humbled by my son and the effect he has on people.I have learned over the years that if you set the bar high you have to really believe your child can reach it. You have to trust them and never let them see you sweat. If you are nervous that is your problem not theirs. It seems every time I was nervous he would fail or get hurt somehow I was wrong. He doesn't always get the prize or finish first but it doesn't bother him. He often teaches me without knowing it.

My son auditioned last week for a play at his school. The school he attends is an arts and academic school so the competition is stiff. Tonight he was asked to go to a call back. I was really proud of him for going for it and making it that far. The audition is from 5:30-8:30. The directer told me since he was a sixth grader he could leave at 7:30. I dropped him of at 5:30 and the interpreter hadn't arrived yet so I stepped in. In the past and out side of this school I am a bit of a barracuda when it comes to interpreters but this school is different. They made the last minute request to the district today so I didn't mind stepping in. I already seen they have no intention here of pushing him aside and have made every effort to accommodate him.

So we walk in to the rehearsal space and it is silent. Maybe 30 kids all stretching on the floor at random. Hayden looks around and says , "Mom there are no 6th graders here. " I looked around and saw all these big kids most from high school stretching like a scene from Chorus Line. At this point I am nervous. If I was an 11 year old in a room full of high school kids all stretching into pretzels I would have fainted. He just sat down cool as a cucumber looking like he was the little boy who was supposed to be sitting here. The interpreter arrived during roll call so I bailed.

I came back at 7:30 and peeked through the window just like I used to do when he was in preschool. I saw my son beaming active in a rehearsal with a bunch of older kids. The directer saw me and ran over. She asked if he could stay, she said he was really having fun. So I came back at 8:30. The kids came pouring out , I heard comments like their eyes were tired and that was long. the all were laughing and it was obvious they had fun. No sign of Hayden......I walk in the room and there is my son asking questions to the directer. She looks over and asks if he could come again tmw. They would really love to have him. Kids were coming up to me asking me to tell him he was so awesome. He would return a sweet smile, "thank you, thank you". I often wonder where he came from and how the heck did we get picked to raise him.

As we walk to the car he is bubbling over with this excited energy he gets when he does something he loves. It is just a sort of elevated glow. Then he turns to me and says it really sucks he can't make fart noises with his arm....he has been practicing that life skill all week.

About 10 years ago.....

This may sound crazy but I would tell any parent who wants to help their deaf child they need to show them Charlie Chaplin and Buster Keaten movies. The comedy is all physical and helps them read people. Hayden also learned how to use his body to communicate more by copying the gags. Trust me on this it sounds nuts but Charlie helped build my son's confidence.

When he was three he wanted to be Chaplin for Halloween. The tailors at my work created a spot on costume for him. His friends that we went out with that night were Buzz Light Year and some other Disney type characters. They were all so cute. I was worried he would have trouble saying trick-or-treat. Even though I always pushed him to go out and be independent I was often really nervous for sweet little boy.

He figured out that Chaplin doesn't talk. So he would do this little gesture with his bag. At one house this old woman comes to the door who of course has no idea what Buzz Light Year is. She sees Hayden and yells, " John, come quick, Charlie Chaplin is at the door!" The man came and they asked to take a picture. Hayden busts out the full Chaplin walk twirling his cane and wiggling his mustache. He always seems to give these little gifts without knowing it.

Acting was also a tool we used for literacy. We would read classic fairy tales with him then act out the stories as a family.It was just one of many tools we learned along the way. He has a love for books and story telling that is not common even among hearing children.

Sunday, September 20, 2009

Careful What You Ask For

About 12 years ago.....
We prepared for our next home visit. At this point we were calm, nervous, excited and afraid. We needed a plan. First we wrote out our ideas of what was important. What did we really want for our child. We did not think about his deafness at this point but rather what did we envision to be a good outcome for any child.

I wanted him to be happy through life. I wanted him to wake up everyday excited to go out and live.

I wanted him to look in the mirror and see someone he really liked.

I wanted to be sure he had the tools and confidence to try anything and work hard in the process.

I wanted a child who lived with grace. who loved diversity and was willing to at least see all sides.

I wanted a child who was strong enough to help others and himself.

I wished for him to be a life long learner and see the beauty in the written word.

I wanted him to know what love was, to find happiness with a partner .

I wanted him to know the joy of true friendship.

I wanted him to enjoy whatever employment he had.

I wanted to give him the option to live as large as he wanted.

I did not want him to be hindered by fear or self doubt.

I wanted him to feel safe and loved at home.

My husband had the same vision. It was really important to start every thought with I, it had to be about my needs and desires so I could push through and know our decisions were about him and not our own weakness.

We drafted up a list of services we wanted. We had decided to focus on a native language he could acquire it naturally, the only option was ASL. We could use ASL to make sure he got a blue print for grammar and structure of language. We would voice off when he was in the room and feed him as much incidental information as possible. we would introduce English through print. We would work on his speech. At this point we were torn between T/C and Bi-Bi education options so we needed more info on both. Here is what we asked for at the second meeting,

1. We wanted to meet as many deaf people as we could. So information about deaf events and any help finding deaf people of all backgrounds. We wanted to interview them.

2. We needed a deaf mentor. We wanted someone with the same hearing lose who did not depend on speech and was fluent in ASL. We wanted someone to take us to restaurants, markets and anywhere our son might go so we could learn how he would navigate the world if his speech didn't become a mode of communication.

3. Our friends wanted to learn to sign but couldn't manage a sign class. We asked for a private teacher to come to our home once a week for sign brunch. This was a class we hosted in our living room. I cooked a huge brunch to entice folks to come.

4. They told me the had a resource library and I had a long list of academic articles and books I wanted to read.

5. We wanted to visit the local school options.

What was so frustrating was we knew what we wanted but everyone moves so slow

tick tock

She would explore ways for us to meet deaf people.

tic toc

She would ask about a mentor and sign teacher but people don't ask for that


The library is so messy, she didn't know if they had the materials I requested


She would arrange for some visits to school programs



I look back at all of my mistakes as a parent and from time to time chuckle. If I could do it all over again I would teach my son to tie shoelaces before the age of nine. At his third grade IEP the teacher told me he couldn't tell time on a clock with hands....oh crap! He could tell you about the birth laws in China but had no idea what time it was. I was so freaked out that because we had set the stage so carefully for him to have a typical childhood we forgot to teach him 2 really typical life skills. He had velcro shoes and a digatal clock.
Hee hee, he can tie his shoes and tell time now.

What does He Hear?

About 12 years ago....

After our first home visit we set up an appointment with an audiologist at the House Ear Institute. My son was tested and we were told he needed hearing aides if he was ever going to have usable speech or hearing. They also mentioned we wouldn't know if they would work at all. Insurance didn't cover them so we needed to pay $1200 out of pocket.

When he was tested with the new aides they told us he was in the speech banana! * this would be the only time they would tell us that, funny it was they same day I wrote the check, just saying...*

We picked blue ear molds because the normal color was so boring. We learned how to put a cord on them an attached them to his shirt so we wouldn't loose them. He didn't seem to mind them and rarely pulled them out. We got used to the whistling when they were loose. We got into a routine of speech exercises and battery changes.

Three days before his first birthday we ventured out to a popular bakery to pick out a cake. It was pretty crowded so we were there for a bout an hour. As I walked out the door with my son in my arms I noticed his hearing aides were gone! We searched the store and found nothing. We walked the street over and over, again nothing. We put up posters on every street post and waited. Nothing. We called the House Ear Institute and made another appointment. We had to get another set.

Over time we noticed he didn't respond to any noise or mimic any speech. We continued to work on it but were not really concerned. He was signing up a storm so we didn't need to depend on his ears for much of anything.

What I found most interesting is how people perceived him in public. If he had them on they treated him with sadness and pity. If for some reason he wasn't wearing them people treated him like a rock star. He was this cute little baby who can sign.

Today, what ever happened to those aides?

We were told they couldn't get an accurate test until he was older so we waited and continued to use them. We saw no progress with speech and decided that just wasn't his thing. By the time he was in pre school they were optional depending on his mood. One day he decided he didn't like them so we tossed them in a drawer.

Later when he was in third grade he decided he wanted to try them again. He was attending a Deaf School and the other kids were getting pulled out for speech. So we changed his IEP so he could have pull out speech. Turns out he just wanted to see what the other kids got to do outside of class. That lasted about a month. One day he tossed them in the garbage at school.

Later I wanted him to have a say in whether or not to get a CI. I asked the school audiologist to give me any promotional material from the CI companies she could find. I wanted the best sales pitch. My husband and I didn't want to find out later he resented us for not doing that. I sat down with him to watch a video from one of the companies. I explained he needed to have an open mind. There were a series of testimonials from elated parents and a few interviews with the recipients. One testimonial was a dad gushing about how his 8 year old was implanted and for the first time he could order from a restaurant! My son turned to me and asked, " Is that kid delayed? Why can't he order from a restaurant?" He couldn't wrap his head around why a deaf kid couldn't order from a restaurant. He turned off the video horrified at the thought of getting an implant.

About implants. We fully support some people going that route. I want to make it clear it was just not the right choice for my son.

Saturday, September 19, 2009

Let The Wild Rumpus Begin!

About 12 years ago...

We spent the weekend reading every book we could manage. By Monday we felt a wee bit more secure. I stopped crying Sunday and my husband got the color back in his face. I woke up at 4:30 to go to work and waited for the call from my husband about the calls he needed to make.

He called the school district Early Intervention. Turns out we were lucky to live in a big city. LAUSD was the second largest district in the country and they had a ton of deaf kids. We were assigned a case worker and she was to meet with us soon. He relayed this information and I felt so calm to know the wheels were turning. I didn't however feel calm to be at work. I was so in love with my son I hated to be separated. My family would visit the set at least once a week. Looking back I was very lucky to have this environment. When they would arrive everyone would give us space to be together. They would fawn over my sweet little one as if he was theirs but then they would leave and my mind would go back to how I would get him what he needs.

Tick Tock

Time was the most important thing. Everyone seemed to move so slow when we needed them to act fast.

Tic Toc

Then we had our first home visit. She showed up and took over. Wow, we felted relieved. We needed to decide what we wanted and she would give us the resources to make it happen! She was really excited we were signing, none of the families she met for the first time did this, and she was very eager to help. We studied some literature she left and wrote up a plan. This wasn't going to be a a big deal, tons of people have been given deaf kids we just need to ask for help!


Well later it turns out the world was not ready for us.


We had plans to meet a friend and her young ones at the science museum. I told my son we would leave at 9am. My friend called and said it opened at 9:30 so there was a change of plans. I did not tell my son of the change because he is the king of DST *again membership has it privileges* and I thought perhaps he would be ready when we wanted to go.

When we were ready to leave my son was shoeless and "sans" hair brushing. He had been reading a book and didn't watch the time. I was a bit grouchy with him as he rushed around at the last minute.

Turns out my friend was late also we had a blast. My son is a science geek and spent most of the time showing the little kids crazy stuff you can do with the aging machine, electricity and some other stuff I don't get. He did this thing with water and air to make a rocket. People cheered, he told me that the ratio of water to air makes it go higher...sorry I was a wee bit tired....

Did I mention it is ok to be tired?

Welcome to Holland- and why we never landed there

About 12 years ago...

When we found out my son was deaf I was in a pool of grief for 3 days. The person I thought he was didn't exist. I had never meet a deaf person and now I was meeting one for the first time. I was terrified . As the days went by I read enough to move away from the sadness. I came across "Welcome to Holland". If you have a deaf child you know what this is. It felt like this women knew exactly how I felt. I had planned to go to Italy and the country I landed in was not the same as my friends. This women's words gave me comfort. We had landed in Holland.

What I didn't realize is we had landed somewhere more exciting. I am sure Holland is nice but our country is amazing. We landed in a place that would change all of us forever. It is not slower paced than Italy and much more flashy. The pain went away and we forgot our dream of Italy very quickly. Our country is more like India, it has famine and disease. It has oppression and ignorance but with that it has beauty, brilliance.

If you travel a lot you begin to realize the only way to know a country is to befriend the locals. They can be your guide to the riches of there culture which makes the country beautiful. They can help you avoid the famine by sharing there food at first and helping you learn to grow your own. They can fortify you to avoid disease and teach you their art. We landed in India and never looked back.

We sent postcards to our friends in Italy and Holland. The friends in Holland where curious about India and often wanted to visit but for the most part were to afraid. They felt safe with the windmills. They admired the Rembrandt's they could never hang in their homes. Our friends in Italy were more adventurous they visited often, learned our ways and shared theirs.

Five years later when his sister was born we landed in Italy! We had dual citizenship and she showed us the culture of this new country with ease. They were very different but very much the same. We enjoyed our bi-lingual bi-cultural tribe.


Life in India and Italy is very busy. My daughter is in Spanish immersion so she is tri-lingual. She grew up active in the local deaf school coming with me when I volunteered teaching cooking, art and acting to the elementary children. She came with me when I taught ASL to children and their parents. She was cast in plays along with the deaf children. She fights back fingers flying when her brother picks on her and shares giggles with him in the back seat on long journeys.

India has been exciting and exhausting. It is hard to convince people that it is the right country for use but after years of struggle and joy we are very comfortable here. We realize we don't need to convince anyone because he does it naturally. We don't have time to compare notes with our friends from Holland because India is to fast and flashy. I am sure Holland is nice but we don't have time to visit.

Tuesday, September 15, 2009

It Boils Down To Language

About 12 Years ago....

So we put our newly identified deaf baby into his stroller and started walking to the bookstore. I occurred to me half way there that he was facing away from us. So he had no way to know if we were even there. We stopped and turned the seat around so he could see us. When we got to the store we found a stack of books. There was all sorts of information and we didn't really know what we needed so we bought it all. We bought books about sign language, deaf education, memoirs and deaf culture. I was startled by the choices. I guess I thought there would be a golden manual waiting for us. A step by step guide on how to raise my precious boy but what I saw was a random patchwork quilt of opinions.

At home we dove in dividing the stack into 2 piles. One for sign language the other for research. We each picked a book from the research pile mine was " The Silent Garden". i picked this book because it was written by a deaf professional and it appeared to be as close to a guide book as I could hope for. Looking back this was an excellent choice. I read it in one sitting and it affirmed my instincts that we must become fluent in ASL. No matter what happens he would have a first language. I began taking notes, the first of many over the years, and organized a plan. Where in the morning I felt helpless I was now seeing a glimmer hope. I continued to read all of the books we had purchased and started feeling a sense of urgency, he had already gone 10 1/2 months with out and real communication.

That day we both decided to spend every free and not so free moment learning ASL. The method I chose was a book, " A Basic Course in Sign Language" by Carol Padden and Tom Humphries. It was published on in California where we lived so the dialect would be pretty consistent with our area and the authors were reputable. My husband signed up for college ASL classes.

At work between shots while the crew was lighting I would pour over this book. Three and one half months later I was conversational. The really cool side effect of this at work study was crew members started to learn with me. One of the Assistant Directors got so fluent we could sign across the set not even using a radio. One time they were having problems keeping a guest actor on set. I was with her and she kept ruining to puke every time she ate. I was to far to walk over and tell them and if I broadcast this bit of valuable info she would of heard. So I signed it across the set. From then on we used it as an effective tool to talk on set when the cameras were rolling or we needed to share sensitive info about a cast member. When my son would visit the caterers had enough sign to take his order with out my help.

My husband had a great teacher who was deaf and a performer. One assignment was to tell a personal story. My husband chose me but there was one problem. He mixed up the signs for hamburger with wife. *this is really only funny if you sign, sorry membership has it's privileges.

The next step was to get an appointment with the school district early intervention program. This is where our story turns into a saga.

School is awesome. He loves his dance class and auditioned for the dinner theatre. For his monologue he chose a story he wrote when he was 9. Here is a clip of his original performance of " The Ice Cream Store" at Deaf Nation when he was 9. The are 2 pieces on that clip.

The audition was really fun for him and he was cool as a cucumber even though he was so nervous.

Every week they have a showcase. This is where all of the kids watch performances from students and professionals in the arts. Well the first one was a concert and they put an amp next to him so he could feel the music. The Principal didn't think it was good enough so he did some research and found an amp system that works through the chair so he can feel the separate elements of the music. Did I mention we love this school! The funny part is it is called a buttkicker.

Monday, September 14, 2009

The Story Begins

Over the years I have noticed our stories for the most part begin the same. If you were a hearing parent of a deaf child 12 years ago your child most likely was not screened at birth. You probably had no back round to reference in regards to deafness and chances are you had never met a deaf person. You enjoyed your sweet little baby and bragged about how he would sleep through anything. My favorite was how I could vacuum and he wouldn't stir. He was healthy and happy.

Around 3 or 4 months you start to notice something but can't really put your finger on it. Sometimes he doesn't respond. At 4 1/2 months you tell your pediatrician you are not sure if he hears everything. The seasoned professional pulls a set of keys from his pocket, dangle them just to the side of the child's head and your clever little one turns his head to the keys. The doctor then tells you to stop reading parenting books and enjoy your baby.

Eventually you convince someone to test his hearing. You wait for a month or two before they can fit you in for an ABR. This is the first of a trillion anachronisms you will learn. While you wait you almost decide to cancel the test because your baby seems to respond to sound. You later find out he is using vibration air current and visual cues to navigate daily life. You go to the test. The results tell you your child has a profound hearing loss. The audiologist hands you some cards and a brochure or two. You are stunned and confused. You ask what you should do. The well meaning professional tells you to get hearing aides fast and do not sign because it will slow the potential for speech. They tell you there is a great oral program in town.

You walk out of that building and this is where we are all left to pick a path.

12 years ago.....

I was at work when my son had his ABR. He was 10 1/2 months old. I was working on a TV show and we were shooting at a distant location meaning no cell reception. There was one pay phone a van ride from the set. I had 30 minutes for lunch so I told my husband to be waiting by the phone. I had a hard time pulling a teamster from the catering truck to drive me to the phone, 20 minutes into my lunch I got a ride. When we arrived a producer was using the phone. I waited, and waited finally with 7 minutes left I got my chance. My husband answered. He told me the news. I had more than 7 hours of work ahead of me.We were shooting at night so I tossed on some sun glasses and sat on set quietly cried. Nobody noticed so I just spent the whole night sitting in my chair rolling the word deaf around in my numb brain.

The next morning was Saturday so we couldn't call any of the numbers on the cards. We felt like the world had caved in but didn't know why. After staring at each other on the couch for 2 hours we decided to go to Barnes and Noble and buy every book we could find.


He finished his fourth day at his new school. Last week they accidentally put him in the grade level math class. They also sent in a special ed staff member to observe him. Hayden raised his hand and told them there was a mistake. He needed to be in the advanced class. He then asked to read in the back of the class until they worked it out. Well I sent his math evals over and they moved him up to the advanced class and the Special Ed teacher felt really bad, problem solved. Other than that it has been so terrific. The staff is awesome and everyone is so friendly. The school district got 2 really qualified interpreters we couldn't be happier. The school is hard to get into so we were nervous about his chances. Over 400 kids apply and there were only 95 openings. This is a public arts school kinda like the school in "Fame" .

So four days in and he loves it. The only class that is a wee bit on the not so happy side is dance. The reason for this is the work is really hard and he isn't the most athletic kid. I am sure once he gets in shape it will get easier. He has made 3 friends and the kids taking ASL love hanging out with him. Funny when I pick him up all these kids are trying to get his attention to say hi. This is an awesome group of kids we feel so lucky that this school exists.The best part according to him is the vending machines in the cafeteria. As of today his favorite classes are English and World Studies.

Sunday, September 13, 2009

To my son,

I ventured out over the couple of days to see what sort of blogging is going on by hearing parents of deaf children. I realized there was nothing in the first few pages of my search that had much to do with your story. We don't plan our days around your deafness, we don't need to change you or make appointments. You are above grade level, you have no other delays , socially a rock star and emotionally sound. I got to thinking that if you were to do a search wouldn't you want to see a family like yours? So here we are. This is in no way an attempt to get on my soapbox. I am not worried for your future so I don't have to preach.

I don't think our way is the only way. I don't wish to fight or strut our success. We did a lot of work in the first 3 years. It was our work not yours. We always made sure your school was giving you what you needed. We advocated for other children not only because we knew you needed peers but because it was the right thing to do.

We decided not to focus on your achievements but take a look at what typical kids your age would be doing and set the bar there. We raised you with deaf adult role models and searched out the best advocates. Ask me later how I contacted Harlan Lane for an IEP referral.

So mom is gonna sit down often and tell you your story. I promise to skip the emotional music and insert a laugh track.