Why Are We All So Scared?

About 10 years ago......

One reoccurring theme we encountered going to workshops and panels was an underling fear of the unknown. Parents seemed horrified that their children couldn't function in the world without speech and yet we knew there were many deaf adults who did just that. They didn't ask how the deaf population navigated daily tasks but searched frantically to find ways for their children to fit into their hearing lives.

We really wanted a deaf mentor and the district was baffled by this request. They wanted to help us but were not set up for this service. We found that the simplest request was always resolved with complicated watered down versions. They didn't have anyone on staff qualified for this position and they told us in order to have this service it had to be a district employee. We were told we didn't need this service because we had made deaf friends but I explained that we didn't want to ask those friends the kinds of questions we were curious about. We needed a guide that could answer the most basic questions without us feeling awkward and invasive. The first candidates they offered as deaf were people that didn't depend on ASL or hearing people who promised to voice off with us. The problem there is after a short time we would stop signing. They didn't give us a clear picture of what our son would look like as an adult.

After a bit of frustration we ended up with 2 awesome deaf adult mentors. One was hired on by the school district at our request. He was a college student who would later teach at the local charter school. We also had a young woman who worked as a office clerk at district offices.

Looking back I am struck by how nervous we were. At a first meeting with the student I watch every movement of his hands for fear I would miss something. At one point he gestured towards his nose and I was lost. I stopped him to inquire what that meant. Uh, he was itching his nose. Right, note to self, relax. He told us of his childhood and education. He revealed many frustrations he overcome dealing with hearing people. We used this information to help us define a parenting style.

The next goal was to get out in the world and learn how deaf people negotiate the daily tasks we take for granted. At the time we were curious about the most simple things. My son will laugh at this because he has no idea how clueless we were. Our other mentor went shopping with us to the little produce markets in our neighborhood. These shops were small and run by families often who spoke English as a second language. The owners were a bit grouchy but my son loved to go there. There was a well known restaurant with a bakery that gave free cookies to children and he would run to the counter every time waiting for this treat. This sort of adventure always included us talking and interpreting for him.

We first went a produce store. As we walked down the street we chatted. She was so confident and didn't notice people starring at us. I asked her about that and she said it happens all of the time and she doesn't pay attention. We entered the crowded shop and as she bent over to look at something she bumped into a woman behind her whom she didn't see with her bag. The woman said something rude and on impulse I started to intervene but was able to hold myself back and watch. The mentor had no idea what had happened, didn't hear the comment and just continued on her way. She paid by looking at the readout on the register. Well that was easy. Next we went to order lunch from a deli. Again I had the impulse to interpret. Again I held back and watched. She indicated she was deaf and showed the cashier she wanted to write a note. She wrote her order. Easy. She wanted a straw and made a gesture the cashier understood. Done, again easy. Every place we went she made it so clear there was no issue. Over time we learned about interpreters, ASL etiquette and deaf culture. It wasn't a long time but it set us up with tools which made it so much easier and relaxing to parent our son. The one element of this service that made it work was the mentors were deaf and used ASL to communicate.

Around the age of three we started having him order for himself by pointing. We taught him how to pay in stores.

Today .....

I am always shocked at peoples reactions to my son. When we go out for pizza it is his job to get the box for leftovers. If a hearing person is with us they almost always leap up to help him. I always stop them. They always look shocked when he comes back with a box.

At one parent workshop at the deaf school a mother of a thirteen year old who was very ASL was surprised to hear my son orders for himself at restaurants. She realized she had never let her son do that and felt bad. She also never had any sort of deaf mentor.

At the same workshop I was so sad when I had to interpret for a 10 year old who was asking her dad for some cake.

We still are grateful for our deaf friends and their willingness to help us. So many times I have asked questions and asked for guidance. We are not deaf but with a little help we have found a way to live as a happy deaf/hearing family. With a little help we live without fear of the unknown.

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.

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.

Today.....

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.