Thursday, November 26, 2009

Graditude

Today is Thanksgiving and in a couple of hours my family will go to my mothers to celebrate. I was thinking about what I am grateful for and there is just too much for one post so I decided to focus on one Thanksgiving that for me was the most important.

About 8 years ago.....

My son had a best friend he had met at school. When I first found out a year earlier I was so excited. We had been so excited when he started preschool because for the first time he would be able to socialize with other deaf children who were fluent in ASL. I asked the teachers if they could contact this boy's mom to set up a play date. They told me she was very strict but they would help us connect. Then I found out she was from El Salvador and a single mother of six. She had very limited English and was just starting to sign. This information didn't mean anything to me because I thought I had a pretty open mind.

I was so excited when she agreed. The conditions of our meeting was she wanted to see my house and meet me before she would allow her son to come over. Of course I understood this and even respected it. the problem was I don't know Spanish and she wasn't fluent enough in ASL or English. To solve this problem I invited a neighbor who was fluent in Spanish to interpret. The mother didn't have a car so I picked her up at the school. The meeting went well and she seemed fine with me but a bit worried that I wasn't a Christian. The rule for her son coming over was that his older brother who was 10 at the time was to chaperon. We arranged a time and date for us to pick up the boys.

We were not prepared for what we saw as we got closer to their home. It was located in one of the most dangerous neighborhoods. When we found it we parked and people were starring at us because we were so out of place. This neighborhood is know for a lot of gang activity. I have to admit I was scared. The family was living in a one room apartment that had been separated into four sections. It was smaller than our living room. I have never seen such poverty and tried to act natural. The mother was a gracious host and offered me what I later learned was papusas a famous dish in El Salvador. At first I denied the food thinking I didn't want her to give me something her family needed but she was insistent. Her son interpreted for us.

We brought the boys to our house and they and a blast. It was a normal play date just like hearing kids have. I was thrilled. The boys were so polite and responsible. I couldn't wait to set up more. Over the next year our families became very close. One would think this family needed our help but to be honest we were equal in generosity. That relationship taught me about respect and dignity. I had thought I was empathetic and liberal in my view of the world but I learned my "charity" and "compassion" was a bit misguided and often paternalistic. I had thought I knew what was best for a family like this but it turns out I was judging them from what I thought was the right thing to do not what was best for them. For this lesson I am eternally grateful. It is just one of the many times having a Deaf son has made me grow into a better person. This mother made sure her whole family learned to sign so her son was never excluded.

One example of this lesson still makes us all laugh. I assumed they needed the kinds of material things we had. One day I brought over an expensive Kettler tricycle that my son had outgrown. I saw the the look on the mothers face that said, "oh Mel, you silly girl" She was always polite but I could sense she thought I was a bit of a goofy creature. We were so different but she never judged us. The next time I visited a few days later the trike was outside missing the wheels and seat. It looked like those cars you see on the side of the road that have been stripped. It dawned on me the tricycle was more of a burden to her. She had no place to store it and felt responsible because it was a gift. Her children played just like other children all over America and didn't need a lot of junk to enjoy it.

So after knowing this awesome family for one year we decided to invite them to our Thanksgiving dinner. By this time the mother and all six kids could sign so we had no trouble communicating. We took two cars to go pick them up and by this time I no longer feared the area. The mother cooked a turkey Salvadorian style and I cooked one my way. She brought a lot of food and we cooked together in my kitchen. She taught me about her native spices and how to make nopales. It was the most delicious Thanksgiving ever. It was a tradition with us to have family time after dinner. The kids could perform or read us a poem or story. The children of this family had decided to write letters of gratitude to us. I still have them. They wrote about friendship, laughter and learning. Not one mention about our two different lifestyles.

Today....

I am still grateful for this friendship.

We still keep in touch with this family. Since that time both families have moved so it isn't very often. We were their first call when they got their VP. The Sorenson guy looked a little shocked to see us gringos on the other end. The two oldest sons now attend college. The deaf son often talks to my son about what college they want to go to. He has been in the same bi/bi school and fully intends to pursue a higher education. I haven't figured out how to turn on the sound on the VP so both families sign. It would be kind of fun though for my daughter to be able to speak Spanish with them.

Sometimes parents tell me they want to learn to sign but they don't have time or it is too hard. I have empathy for this but to be honest not a whole lot of compassion. Yes, I know that is judgemental. It just doesn't make sense to me when I have seen so many families with mutiple challenges in life find a way to learn.

I am still learning what is best for my son and I am grateful for all of the lessons his deafness brings our family. I am also grateful for all of the people who we have met because of him.

Wednesday, November 25, 2009

Show Pony

This post is just an observation. It is just my rambling thoughts which are not positive or negative.

About 10 years ago.......

One thing that has always been a challenge raising a deaf child is the responsibility cast on my son to perform. With his education professionals and parents are always watching him. From a very young age everything he did was scrutinized. People look at his progress hoping for success or failure depending on their beliefs. He is always on stage. At this early stage of his development I had boxes of documents concerning his growth. They are the party favors from scores of meetings focused on his claim to this world. The evaluations were always stressful because he may have an off day or become bored with the tester.

I asked for an ASL evaluation and was told he was to young. I pressured for it and got my wish. He was almost three years old. The people who administered the test were deaf. There was a teacher from the charter school and an aide. My son was excited to be in the room full of toys but wasn't really in the mood to preform for the teacher and camera. So instead of sitting sweetly answering the questions he wiggled his way under a bench to play hide and seek. The proof of his fluency was my conversations with him trying to convince his to do the test. We were able to finally finish the test after some patient redirection.

I remember the times we would be in hearing environments and he could never just blend in. It was always the quiet center that he was deaf. At this age he wasn't aware that people watched him. If we wanted to go to an avent I had to arrange for an interpreter. Sometimes people would be critical if he got bored and didn't pay attention even though the hearing kids were doing the same thing. Others would be supportive but didn't realize their well meaning questions and attention again brought that focus that makes it hard for him to blend in. If I had to push for accommodation the pressure would be on to make sure we went. If he was having a bad day we had to go anyway because I made such a fuss to get the interpreter.

There were many funny moments. Often when we would go to restaurants people would just feel so comfortable staring at us. We would voice off and they didn't know we could hear them. It is so odd to hear someone talk about you unfiltered. Often folks would just walk up and start to sign. Once a woman was so excited to show off her skills she interrupted us arms flying and started to sign the alphabet. Honestly what are we suppose to do with that? We were always polite but sometimes had the impulse to walk up to strangers and sing the alphabet song at random moments. It was interesting trying to explain to my son why strangers would walk up and spell their name and then just stare blankly.

In many ways our life was typical but there were many ways it just wasn't.

Today...............

My son lives in a strange world. He is very comfortable being deaf but wishes there were more people like him. He is still having to perform.

When I arranged to go to a play recently he needed to show gratitude for all of the special attention from the theater company. He got to talk to the actors and directer. It was really cool don't get me wrong. He was very happy but really I think he wishes he could just go places and blend into the crowd. It would be nice to just decide on impulse to go see a movie or play.

The school he attends is so welcoming. He does however need to learn what to do when kids walk up and sign "hi". He responds, "hi". Then the other child just stands there. The first day of school everyone swarmed him. They were so excited to have a deaf kid at school. It is kind of like being a foreign exchange student. The other new sixth graders could quietly get oriented. So this is not bad but just much different than the other kids.

He is the only deaf kid and sometimes that is lonely. It would be so cool if a bunch of deaf kids applied to this school but they don't. So we are trying to find ways to stay connected to the deaf world. There is also the pressure of mainstreaming with a mom like me. People thought because of my beleifs he would never mainstream. As always we are just piecing it all together the best we can.

Tuesday, November 24, 2009

When simple seems like a dream

About 10 years ago........

What I am writing is just what I felt at this time. It is in no way am attempt to judge others experience and is unique to our family. It is really hard to just tell exactly what was on my mind because it is such a touchy subject but I think it is important for my son to know what was going through our minds right or wrong.

We had this idea that if the Early Intervention program would just allow parents the opportunity to experience ASL in a group setting with deaf adults we all could benefit. It seemed so simple and we couldn't figure out why others didn't get it. There was nowhere in the system to accommodate this. There was the option of going to the charter school for ASL lessons but nothing really that modeled a fully inclusive environment for us with our kids.

I asked for my son's IFSP to be amended what felt like a million times. I worked my way through the chain of command. Just today I sat down and looked at my son's IFSP from our second year in the system. We had a new home visit teacher who was hh and hired in part because of our pleas for a deaf teacher. She was awesome and a wee bit naive. We had 11 outcomes listed on our IFSP and they all were concerned with ASL and exposure to deaf adults in a group setting. We had prepared the wording before the meeting so the school district would be legally obligated to comply once it was signed. Of course she wrote it all down and everyone signed but of course it didn't happen and we fought harder.

The folks involved all thought I was crazy because my son was fine in fact exceeding benchmarks for hearing kids. If he was fine why was I fighting? Well.... he needed peers and I knew once he grew past the stage of play that is typical for a 2 year old, once he became a critical thinker, once he needed other children to learn how to enter the world he would be at a disadvantage.

I was also so frustrated that other parents were asking for help and sent down the rabbit hole of "non bias support". It was the stance of the system to not try and influence the choices of the parent and yet that stance left the parent without any information beyond the programs set up by the schools.The programs were set up by folks who believed in a certain philosophy. It really presents as a bias approach and wastes a great deal of time while the parent researches and decides where to go. While they wait they are influenced by the teachers college back round. Educators are practicing what they are taught and there were (maybe still?) not enough college programs that support ASL as a first native language. So I felt my son deserved the right to be educated by and with people who shared our philosophy of ASL as a native language. This of course is my opinion of what we were experiencing. I am sure others did not feel this way.

Well I could go on and on about why I still wanted change....


Today....

My son became the ripe old age of twelve last week. Birthdays are always such an measure of where we are at.

About a week before I asked him what he wanted to do to celebrate. He wasn't sure. I suggested a party with some of his hearing and deaf friends. He didn't really jump at that. It tuns out his deaf friends don't like the stuff his hearing friends like. We didn't really know what to do. He decided to just invite his CODA friend for a fun outing and a sleep over.

The next day his new hearing friends ( ASL students who hang out with him every day at school) texted me to tell me they were planning a surprise party for him. I offered up my house and pizza they did the rest. It was really fun and a big surprise. After the party they all went to a musical at school. There were two interpreters and they meant to have his silent amp on his chair but the new sound board wasn't set up for it. He still loved the play.

The next day a teacher and mentor told me about a Comedia Del Arte play at a local university. My son is in a commedia play right now and would jump at the chance to see it. I had a week to get interpreters. The directer emailed me and said he was trying to figure it out and that they had never had a request like this at the theater. I expected the worst and pleasantly surprised when they not only got two theater interpreters but the directer met us at the door and walked us to our seats. He talked with my son and had the actors come introduce themselves. When it was time for the play to start the sang happy birthday....in ASL.

He tells me this is his best birthday ever. What hit me was there were no deaf people involved and this felt really strange. He didn't seem to notice. I have to admit I am a bit confused.If 10 years ago had someone told me my son would be mainstreamed full time and very happy I would have laughed. Had someone suggested he wouldn't be isolated but in fact very social with his hearing friends again that would have solicited a laugh and perhaps an eye roll. I believe that because we did raise his in a bi/bi enviroment he has the tools to navigate the world. He is still Deaf but it does not define him. He doesn't want to be hearing and celebrates deaf culture. He does however also love the rest of what life has to offer. He has reached an age where I don't need to choreograph every aspect of his life. I will slowly step back and watch him suceed or fail on his terms. I will not look to the future pretending to know what will happen next but I will fasten my seat belt and enjoy the ride.

Friday, November 13, 2009

Send In The Clowns

Next week we will be celebrating my son's 12th birthday. I have found his birthday celebrations to be a good window into where we were at.

Eleven years and ago.........

I have made many mistakes as a parent. One I am a wee bit embarrassed to admit is I am a little too into being a parent. I have mellowed in a good way, but when he was born I was kind of crazy. We were not really kid people before but suddenly we were knocked head over heels in love with this little person who entered our lives. Everything he did was cause for celebration. I wanted to do all of the mommy stuff. I couldn't wait until he could sit in a swing or bring home macaroni art that would be framed and admired by all. Our friends didn't have kids so he became their outlet for buying every object that could be applied to child. In short for the first few years he was spoiled.


As his first birthday approached I went into high gear planning the celebration. We would invite everyone! I imagined a huge outdoor party with tons of food and decorations. Since we had recently discovered he was deaf I wanted the most visually pleasing environment so I went nuts. My level headed husband pointed out none of our friends had kids so it may be a bit odd to throw a party for a one year old attended by adults humouring my mommy obsession. I calmed his fears by explaining we would just tell folks it is a BBQ for his birthday and make it more adult. As luck would have it a ten year old actor was a guest star on my show. I have had a lot of exposure to child actors and she was the only one who didn't seem effected by her work even though she had stared in a major motion picture. She met my son on the set and she told her dad she wanted to come to his birthday party. It was so cute that she had her dad ask me and he said he understood if I didn't want her to go. Well heck yea! I didn't have any kids on the guest list yet! What a strange life we lead, I was searching for kids like a movie casts extras.. One of the guys on the crew had 2 kids so we were set! At the party the guests honored my request of no high end brand names or loud toys (membership has it's privileges) by giving us the entire line of Ralph Lauren apparel and a drum set just to mention a few of the gifts. Very funny guys. I don't think we had any deaf people at this party but I had invited a teacher or two. My husband and I were frantically trying to sign everything.

Ten years ago......

His second birthday was just as big but about half of the families were deaf and most of my friends could sign enough to get by. We were knee deep in anger at the School district and I was a bit of a soapbox mom about Deaf Ed. I was angry because all these hearing people paid to help me were treating me like a crazy person. I was grateful because we had a deaf community picking up the slack with gentle, generous hands.

Nine years ago........

Birthday number three is the one which really best illustrates what it was like for me being a hearing mom of a deaf son at this time. I am not deaf. I tried and provide my son with a quality of life that is as assessable as possible so I tried and think ahead about everything I did so I didn't trip and make a mistake that would effect his feelings about himself. He never saw this at a young age and I planned it that way. I had a "plan" if he felt his deafness was just a characteristic like hair color he would be strong enough to face the challenges that may come later. My husband and I tried to live as much as we could as Deaf/hearing parents. What I mean by this is nothing we did excluded him if we could help it. The problem was we hadn't had the early support from folks we thought were going to help us and well, we are not deaf.....

He was turning three which was huge. It meant we could leave behind the frustration of early intervention and enter the world of bi/bi preschool. It was a time surrounded by supportive deaf community from all walks of life and hearing friends who had chosen to join us in celebrating our new life.

I asked my son what he wanted for a theme for his birthday. He had just gone to a circus so he told me a circus party and he wanted a clown. Well we had just gone to a hearing party where the family had a hired entertainer. I decided my son deserved the same thing. I first asked around if anyone knew a deaf party entertainer, nope. I then called the deaf association, nope. I then resorted to the phone book. I refused to believe my son couldn't have that clown because he was deaf. At this point I want to mention I am not a fan of party clowns they are kinda scary to me. I called and called. Finally I called and a man told me they had one person who signed so I booked her.

This is the first time folks helped plan the party. His Deaf babysitter baked a circus cake and made decorations with me, Another deaf friend helped plan games. I found some wood set columns being tossed on the set and the crew helped me cut them into pieces and paint them like a circus ring. This party was a gathering, a celebration with a community.

The day of the party was awesome. Friends arrived and communicated freely. Tons of children showed up fingers flying. Life felt very good. Then down the road approached a dented economy car in need of a good wash. From this death trap emerged a young woman in a clown suit. I was a professional costumer so I have a sense about apparel in terms of how to develop character. I found this ability often spilled into my daily life. I could tell a lot about a person by what they wore. This clown was also in need of a wash. Her costume and props were a little too well loved to present as professional. As I approached her I noticed she was nervous scanning the crowd. I introduced myself voice off because I assumed she was fluent. She looked at me in terror, oh crap, she can't really sign. She gathered the children and began her routine. She signed at a first year high school level. I was so horrified and embarrassed! The parents who were standing around the performance began to make jokes, myself included. We knew we were signing so fast she couldn't understand.

My son turned to me and said, "Mom she is weird, what is she doing?"

I told him it was rude to make fun of people.

I was so embarrassed in front of my Deaf friends. I didn't show it but I felt like a failure. I couldn't even throw a party for my deaf son. Later I looked at the tape and saw the adults pulverizing that girl while she went on with her act clueless we all thought it was a joke. The party was a lot of fun and the clown was just a point of humour.

A short time later we attended a party for a deaf of deaf child. They had a deaf performer who did her routine on stilts and juggled. My son LOVED it.

Here is what I reflect back on

It was a lot like Early Intervention getting help for my party. I am hearing and need the help of deaf adults to learn the ropes, because the people in charge of this help are hearing and only involved with deafness as a job. I was left with having to go to great extremes for an ineffective outcome.

I also am now embarrassed that I was so cruel to this girl. We were not rude in a way she understood so she doesn't even know but if I had been more secure with my abilities to parent a deaf child I would have been more empathetic. Looking at her attire I should of realized she was maybe in desperate need of income perhaps and couldn't afford the dry cleaning bill. She was probably offered the job and assumed it was a hearing family with a deaf child who really didn't sign. I had used my voice to place the order. A lot of hearing families didn't voice off when they sign. She probably put ASL down on her application under other skills because she had taken a class in High School. She was wrong to take the job but I understood why perhaps she did.

The worst part of the whole story is I reprimanded my son for doing exactly what I was doing.


Today.......

My son is excited to turn twelve. His life is much bigger now than when he was say 10. His favorite class is modern dance. I know that sounds strange but trust me it is a ton of fun for him and he has an awesome teacher. I find that I underestimated him. I really thought dance would be a bore for him. A Deaf friend tells me she love dance and I souldn't be surprised.

Happy Birthday kiddo, I am one really proud mama.

Wednesday, November 11, 2009

Dear Miss Kat's Parents

Dear Miss Kat's Parents,
Thank you for your comment on my recent post about car alarms. I realized when I read it that folks may not understand my point. So I will try and clear that up. I tend to have a certain style of writing that is not always a point by point presentation. I am writing this for my son and if I were to do that he would be asleep in seconds. I am leaving thoughts for him to ponder that are my own based on my own experience. I can not change what I felt back then and I am sorry if my opinions at that time frustrate you more. I realize that my blog is public so I wish to approach it with great care.

I don't know you or your daughter just as you don't know my family. Judging from your comment I am guessing (since I don't know you I am left to guess) that I represent a type of person you know. Perhaps a type that frustrates you and doesn't see you working so hard to what is best for her child. Perhaps this type of person just doesn't get how you did give your daughter a native language etc. I am sorry for this. I try to only post my opinions on things I experience first hand.

About the post I hope this helps,

Quote from your comment

"Please don't paint all parents with children who are learning spoken language with the same brush. Unless you have lived with their children, and know them, you can not judge."

I should have clearly stated my point.
*note to my son, this is the kind of writing I do that bores you, feel free to go make a sandwich and tune in later*

This woman had very little in the way of clear information. She was so desperate for her son to hear she took the slightest hint that he could respond to sound to make a serious decision.

The mother in this post does not resemble you at all. She had limited ASL skills, her son did not have a CI (that is is just a fact and not an opinion on CIs) and his only real access to language was at school. Since unlike your daughter I knew him well I did know he did not respond to any sound from what I could tell. His mother talked at him so I imagine if he had the critical thinking skills to wrestle with the complex idea of hearing he may have had an opinion. Since he had not fluent language or the age to develop critical thinking skills that would be a super hero task in my opinion. He did not try and express himself with speech. My own son however does respond to the vibration of a car alarm. This mother told me that the specific reason she was going oral was because he responded to a car alarm. I did later see him and I chose not to reflect on that but the post was after seeing the outcome.

About the other children in this post, again I don't see how I took a paint brush to your daughter. I know all of the children from the hours of volunteer work I did at the school. They often shared their stories with me. I often interpreted for them to their families at social events. Some did have a CI but their mom's did not resemble you so again I am confused. I read my post again and don't see where I mentioned a family who used ASL, had a bi/bi program (we had one for only 1 1/2 years) has a child with a CI who wants to go to an oral school. So I am sorry if you saw your family in this post.

What I do see is me, a mom who belongs to a very tiny minority of hearing parents who are frustrated. I see a mom who has seen what can happen when a child is given no language naturally.

What is a bit sad to me is that I have read your blog and I am sure if we met you would find I am not the person your think I am in fact we have a lot in common. In my opinion many parents of deaf children would be less frustrated if they reached out to each other. That is a can of worms though. This also makes me wonder how you decided to read my blog. I assumed my demographic to be few Deaf adults, bi/bi parents ( I guess that would be about 2% of parents of deaf children and maybe 2 would find me), and students. In short I never imagined anyone would take notice since I have been advocating for kids for years and folks just don't care to listen to me. So thanks for reading.

I hope this helps. Sorry to post this so publicly but maybe if I do others that may be lurking can get a clear idea of my perspective. Don't worry my friend nobody listens to me.

Warmest wishes,
Mom just like you

Tuesday, November 10, 2009

Warmest Regards, Mother of Deaf child

Dear Early Intervention Specialist,

I am so excited we met you! After our meeting I felt so relieved that there was a system in place to help us navigate this new territory with our newly identified deaf son. I must admit I was scared but after talking with you I feel so confident. I never imagined that there would be so many things for us to access for help. My husband and I are working on learning sign language and are curious about our options. I can't wait for our meeting next week!

Warmest regards,
Mother of deaf infant

**********************

Dear parent of deaf infant,

It was great meeting you! It is so rare that parents wants to sign. We are really excited to work with you. I can't tell you how frustrated we get. So I am giving you some information to look over. We need to evaluate your son and get him on an IFSP. That just gives us an idea of where he is at so we can better service him.

Early Intervention Specialist

****************************

Dear Early Intervention Specialist,

Thank you again! It is such a relief to have someone to talk with about this. Do we have to wait for the evaluation to get some help? I have been doing some reading and it tells me we have a child who has been without language for almost a year. We are tying our best but feel nervous. Again than you for your help.

Warmest regards,
Mother of deaf infant

*******************************
Dear parent of deaf infant,

Don't worry, once we get the IFSP we can help you.

Early Intervention Specialist



****************************


Dear Early Intervention Specialist,

So we had that IFSP meeting, thanks! Can we get an ASL teacher to come to our home now? Our friends feel weird that they can't communicate and they are having a hard time trying to find a class.

Also when do we get to have a deaf adult come and show us the ropes?

Warmest,
Mother of deaf infant

.................................

Mrs. Mother of deaf infant

Well you didn't have that included in your IFSP. We need to have a meeting for that.

Sincerely,

Early Intervention Specialist

...................................

Early Intervention specialist,

Oh, sorry I didn't understand. I am so focused right now I didn't think to research the fine print. Can we schedule another appointment for that please?

Mother of Deaf infant.

''''''''''''''''''''''''''''''''''''''''''''''''''''
mrs. mother of deaf Infant,

I will be coming to visit you next week. We can discuss it then.

Sincerely,


EARLY INTERVENTION SPECIALIST
............................................

Oh, OK, we need help now.......


.

Saturday, November 7, 2009

I Hate Car Alarms

About 8 years ago....

On Saturdays during the summer my family would always set out on an adventure. One such day found us in Santa Monica shopping. We had stopped at an outdoor ice cream shop for a snack. My son was trying convince me to invite his friend for a sleep over and it was beginning to be a bit of a whiny exchange when I said no. I looked out on the sidewalk and saw a mother of a child that attended the same Bi/bi preschool as my son. I invited her to join us. I was relieved to have a distraction because to be honest my son was driving me nuts. Yes, even though I love him to bits and he is amazing he is a typical kid and I am a typical mom and sometimes he would whine and I would get frustrated.

We started our conversation with the usual polite inquiries. How is your family? Enjoying your summer? I was a wee bit frustrated that she wasn't signing so I had to interpret the whole conversation. My pleasant distraction was not helping by talking.

I asked if her son was excited for school to start.

She said she realized her son wanted to hear.

She was going to transfer him to the oral program because of a car alarm. He had responded to a car alarm and based on that he would go to an oral class,

based on that the district would honor her wishes and support her decision

based on that she would stop signing,

based on that he was now cut off from the deaf community

based on that he would most likely not have a naturally acquired native language

based on that he would struggle to grasp English

based on that he would most likely have academic and social delays

based on that people would blame the delays on the child and his deafness, my guess is at the age of four he really didn't want to hear

and based on that I hate car alarms.




Today, historically from what I have seen......

I was surprised that a lot of the deaf kids at the state deaf school where so behind their hearing peers academically. I knew most of them from volunteering and they were smart, creative kids. There were only a handful of kids in elementary but many more in the upper grades. The answer, they tell me is because many mainstream to begin with and the families often don't sign much so by the time they reach middle school or high school they are labeled as failures and shipped off to the deaf school to undo the damage.

At the deaf school they maybe find community for the first time. They are often taught by educated deaf adults who understand how they can easily access the curriculum. They can socialize in the comfort of their accessible language and have deaf adults to model culture, humor and folklore.

I often daydream and think what if? So what if the family starts signing early, in fact all families? What if they are supported with speech,English, ASL, and community. What if the parents are introduced to the world they have entered with their child by someone who has first hand knowledge? What if because they had this support they will enter the world on equal terms? What if the reverse happens and they mainstream later and find success? What if they stay at the deaf school and still find success?What if we let go a bit? What if we give up a wee bit of control?



Everything I post is just my feelings from raising my deaf son. I am posting for my son to understand his history and family. I in no way wish to upset anyone.

To Read Or Not To Read...

Today....
Last night my son came to me and stated it was time he read some Shakespeare. He wants to know what all the fuss is about. He also found out that his reading fluency tests at the 11th grade level and he is in the 6th grade. He wants to improve so he is trying to challenge himself.

Well that means I am going to have to read it also so I can answer questions. My first exposure to Shakespeare was when I was thirteen and I must admit it was under duress. I began to really enjoy it but that was almost thirty years ago and my brain is a bit more weary. We'll see how it goes. As a teenager I was a bit of a rebel and an acceptance letter to a school I applied to stated that they looked forward to my presence at their school. I was to be a challenge much like Katherine in "Taming of The Shrew". Perhaps this is the play we will start with.

About 11 years ago......

Literacy is a hot topic for deaf children and one we didn't take lightly. We knew that our son needed to be literate to fully enjoy life. I didn't have any educational back round in this area so it meant I had to do some research. What seemed very obvious is language holds the key. A hearing child must have a native language to access the written form. How were we to give our son access to the written form of English if his native language didn't have a written form? He needed a naturally acquired language first and his only way to acquire language naturally was visually. Yikes!

I can't pretend to have the key but here is a sample of what we did and it seemed to work.

1. ASL. Plain and simple fluency in a naturally acquired language is more than half the battle.

2. We read, we read a lot. Every day we would read to him. We would sign the words and then allow him time to look at the pictures. We would show him the text by pointing then show him the sign. We would often sign right on the book. We would read the same story over and over. I am grateful I may never have to read "Goodnight Moon" again. We would expand on the stories asking questions about the characters and pictures. We would sometimes ask what if questions like "What if there was a cupcake under the bed? Would you say goodnight or gobble it up?"


3. We would act out stories we read. His favorite were Billy Goats Gruff and The Three Little Pigs. This seemed to help him understand the structure of the story. There is a beginning , middle and end. This is also a great way for the family to involve a deaf child. I know a mom who has four kids, one is deaf. She was frustrated that the hearing kids were not including her deaf daughter enough in their play. She tried reading a story and having the whole family act it out. Everyone had fun and hear deaf daughter was thrilled.

4. We would draw pictures and have him tell a story and then we would dictate what he said under the picture. He liked to give the pictures to people and "read" them the stories.

5. We pointed out text everywhere. For example if I was reading a poster I would sign along as I read. I would read labels at the store while signing and menus at restaurants.

6. Finger spell. One of his first signs was ELMO

7. Make grocery lists and draw pictures of the items. We would have him find the items and put them in the basket.

8. I made a book with pictures of everything we did. One page might be grandma's house or items we used a lot like sink. I would label the pictures. We used this to show him where we were going or what we were doing.

9. I am a wee bit embarrassed to admit I labeled the house. My husband thought is was funny when we had guests over and they sat on a CHAIR at the TABLE.


So this is some of the stuff we did when he was little. It was not boot camp but tools we would use. We didn't ever force him. If he didn't want to read no big deal. We allowed him to set the pace. If it wasn't fun we didn't do it. Most of these ideas came from workshops, parents and teachers. I wish it would of just been all in one place.

Wednesday, November 4, 2009

Chaplin on Halloween


About 9 years ago......

So it was Halloween just before my son's third birthday. We had been fighting the school district for ASL based services and although they offered some of what we wanted is was mostly weak interpretations of the desired service. The big needs were not met. So we had fashioned our own little world to try and fix some of it.

By now we had many deaf friends from all walks of life and deaf babysitters. We also had friends who were teachers in a bi/bi setting. We tried to expose our son to these friends often. Many of our hearing friends had been able to learn some sign.

We had the idea to throw a huge Halloween party for all of our friends. This was brave because it meant inviting (but not limited to) hearing, deaf, young, old, teachers, film workers, old college friends, right wing republicans, far left democrats, Mormons,atheists, Texas cheerleaders, every race and a hair stylist. We wanted everyone to enjoy themselves and feel comfortable. We bought tons of food and decorated. It was so much fun getting ready then my husband decided to voice an opinion on our decor.

I had a fear my son would be delayed in reading so I was constantly exposing him to written English. Grocery lists were labeled with little pictures next to the words, we read every day and pointed to writing on every object we encountered. One day I decided to label the entire house. I made handwritten cards to paste all over, chair, table, sink etc. No object in our cozy home escaped my obsession. Had I thought of it I am sure I would have made two more labels for mom and dad.

So as we were decorating for the party my husband suggested perhaps we could remove the labels. I actually resisted. I was so scared that he wouldn't learn to read I had become a bit over zealous. My husband won that with the agreement that they would all go back up first thing in the morning.

It was a costume party. My son wanted to be charlie Chaplin and he wanted me to be Chaplin also. The day of the party we got dressed and waited for our guests. We were nervous because although we had a rainbow tribe many had never met.

This is what I learned

Deaf people tend to be late. I had been told about deaf standard time but this was a very clear example of where the term came from.

Hearing people form little groups on one side of the room deaf on the other. A few nervous hearing people gather outside.

The deaf community is small even in a big city. We found out many of our friends knew each other. They were shocked in some cases we knew someone they didn't like. Just because you are part of the community it doesn't mean you are friends.

Deaf and hearing people like my spinach dip but not so much my roasted veggies.

Hearing and deaf Mormons don't drink wine.

The status of your guests hearing does not determine who will end up with a lampshade on their head.

Deaf people tend to take a long time to say good-bye which by the way is one of my own characteristics.

All of our friends regardless of their unique characteristics love my son.

Everyone had a good time. My son was in heaven.

Today or a few days ago.......

Again my son was Chaplin for Halloween. He is a bit of a method actor so the costume had to be head to toe perfect down to the socks. He even studied the walk. When he arrived at school he texted his friends,
" You will not recognize me but I will give you a hint, I am a tramp. The first one to find me wins"
For those of you who don't know Chaplin, his character in silent films was the little tramp. He was playing with English and that killed me.

Halloween night he invited his best friend who is a CODA to come over. His parents were coming for dinner and we do this every year. My son asked if he could invite some friends from school. Well sure I told him, thinking maybe one or two. Well to my surprise the ASL club showed up and my house was full of signing hearing kids. It was so comfortable because the kids and deaf adult could chat with ease. Wow times have changed.




Monday, November 2, 2009

Dr. Larry Flesicher

I had planned another post for tonight but I just learned of Dr. Flesicher's death and felt compelled to flash forward a bit. I was planning to tell this story later so this is a condensed version.......

About 9 years ago......

We felt tired like we had been fighting a loosing battle forever. All we wanted was a Bi/Bi education for our son and the school district thought we were crazy. People who supported us were afraid to come forward for fear of their jobs. We took our fight to the top of the chain and still no results. Out of desperation I emailed Harlan Lane for help. I needed an advocate and wanted him to give me names. It was a shot in the dark. Why would he respond to me? He responded quickly and referred me to Robert Hoffmister. Again I was shocked that he responded so quickly. He said Larry Flesicher may know someone who could help.

Dr. Flesicher responded quickly. He told me he would attend the IFSP meeting I was concerned about and he wanted two interpreters and needed their names. I was over the moon. The school district was nervous and sent a ton of people to the meeting. He was so cool, when he saw one of the interpreters make a mistake he corrected them. The school district people looked like frightened children. For the first time they listened to me. This man took time out of his very busy schedule to help a family with a deaf 3 year old. He treated us with respect and was a huge help. The thing is he didn't know us. He could have easily brushed us off but he didn't.

So I send my deepest regrets to his family. He was a turning point in my son's life. We are grateful for his generous support of our son. In our view he was a great man.