I brought Heath to Washington DC while on a work trip so he could stay the weekend with his best friend.  His family moved recently from Fremont, CA to Washington, DC so his mother could pursue her PHD.  They are such an amazing family who live on campus at Gallaudet University and we miss them tremendously.  I dropped him off on Friday morning to a quiet campus that looked like your average college campus, but what I experienced the next day after the homecoming game was truly an emotional experience.  There were so many Deaf people and so many people signing!  We are fortunate to live in the Bay Area where there are many Deaf people and so going to events with many people signing is not foreign to us.  However, the energy on that campus and the diversity of all the people was just so overwhelming.  All different colors of people coming together for a common goal; see the football team win!  Which they did not, ha!

Coming to the other side of the country and meeting all new Deaf people who are just as welcoming as those are at home continues to solidify that we have made the right decision.  I met amazing Deaf people this weekend and again I continued to be wowed by the diversity in professions.  I met a Deaf lawyer… so cool!  I also me the woman who created the world wide viral campaign of why I sign. It was like meeting a celebrity. Oh and after four long years, I finally received a name sign from this amazing woman!

It is definitely not easy for us to learn ASL and we struggle daily with communication but we know, for our family this has been the right choice.  The growth and confidence he receives by being a part of this Deaf community far surpasses any clinical outcomes that would be positive.  Many people have told me that the Deaf do not welcome outsiders into their circle, they are exclusive rather than inclusive and they have strong opinions about how to raise Deaf children.  People tell me we are making a mistake by choosing this path for Heath and we are limiting his abilities.  I believe we are doing the exact opposite.  While the Deaf do have strong opinions about how to raise a Deaf child it comes from a place of knowing, what it IS LIKE to be Deaf children themselves.  While no parent appreciates other people telling them how to raise their children, in this case it would behoove hearing parents to listen to Deaf people on this subject.  It only builds a stronger bond between you the hearing parent and your Deaf child.  I feel that those parents who do not give the Deaf community a chance are limiting THEIR opportunities and by forcing a child to take a path because it is convenient for you as a parent is wrong.  My firm belief is that we need to just let the child be a child.  We are along for their ride not vice versa.

And that is my perspective.

This is such an interesting comment!  It sparked my curiosity.  Actually it sparked my motherly crazy instincts to attack the person that said it. But then I decided to educate. Here. We are going to do it here. Because I don’t want to yell at her or anyone else in public anymore for staring at us while we sign… aka (talk in public) No… at first glance he doesn’t “look Deaf”. There is no “extended disability” (heard that one too…Grrrrr!)  He’s identified as Deaf with a capital D.  Because we have given it to him. He’s clinically deaf but we don’t allow him to identify with that end of the issue. We gave up the “clinical options” when he was 1 year old.  It just wasn’t for us. We wanted to enjoy our baby and love him for every milestone he accomplished Deaf or Hearing. (By the way… no difference from his hearing sibling!  He’s been on par with her since birth. He just does it in ASL) We raise him to be proud of his difference and embrace what has been given to him. He lives by the same expectations as his hearing sister. Do well in school, educate yourself and contribute to society don’t be a burden!  It’s your job to make this world a better place. This is how we raise our children. Hearing or Deaf. But, Let’s take a stroll down what Deaf looks like!  This is my Deaf family member 😍😍😘😘😘 and these are my Deaf friends!! This is what Deaf looks like! A model? Ok! Beautiful, kind, innovative and reallly attractive. Okay!

An accountant? A mother of two and the bread winner.  Ok!How about a powerhouse business woman with a flare for marketing?  Beautiful inside and out. A mother of 3 and a lover of animals.  Ok!How about a business owner, a PHD student, a star baseball player, an onery toddler and a beautiful baby? Ok! (P.S. Yes they are all Deaf) and the best friends a hearing family could ever have! Truly amazing people. An amazing photographer? A teacher, a wife, a mother of 3 boys and advocate.  A truly amazing person. Ok!

This is the problem with society today. We build stereotypes based on the outer appearance of people. Not who they are within.

There is so much I want to say to my boy about overcoming diversity or challenges but really society needs to make it happen. I can talk until I’m blue in the face but the world must change. The perception of who he is and what he brings to the table must change.

People need to understand “Deaf” doesn’t look like anything.

Deaf… is an identity, it’s his identity, it’s his culture, it’s his people, it’s his extended family, it’s his right, it’s his legacy and it’s his duty to represent it with the upmost respect and confidence of yes! This! Is! What! Deaf! Looks! Like!

So again I state. What does Deaf look like? It doesn’t look like anything.

It just is.

And that is my perspective.

It has been a while since I have had a chance to post something on our blog, but I am taking the time today to talk about an issue looming over the Fremont Deaf School and their community for the past few years.

Jon and I take a back seat to any issues facing the community as we respect their wishes and follow their lead.  Two months ago, we were asked to sign a petition regarding the removal of their superintendent.  We were shocked!  He is a Deaf young role model in the community with a PHD.  Why would Deaf people want him out of the school?  It just did not make sense to us, so we did not sign.  We would not sign anything without full context.

Over the next two months, we did research about the issue.  We found out many things about the school and the leadership over the past few years.  We discovered the decline in admissions at the school, morale of the teachers and movement of positions that did not make sense from an outsider’s perspective.  Many talented Deaf teachers were moving to schools outside of the state.

I have to say that the more research we did the more we could not believe it.  How could this happen?  Heath is in The Early Childhood Education program so we did not really see too much of an issue.  Heath was thriving, he loved school, and his language was skyrocketing so we were happy with the results.  Last year we did notice a decline in home visits and other activities from the teachers, such as the loss of the ASL teacher position, but we were not too worried.  We expected the school to adjust and recover.  The ECE principal and teachers are phenomenal educators and do their best to shield the children and frankly the parents from the political issues at the school.  Now looking back the enrollment of the children in the ECE program has declined.  There are only five kids in his class now.  Last year there were 15.  Where are they… granted many moved because they got older and so the pre-k class is larger this year, but there should be more kids now in his class!

The issues came to ahead on the first day of school, teachers protesting, media doing stories, California Association of the Deaf and the AFTC stepping in, the teachers Union threatening strikes and all the while, many hearing parents like us still baffled by what really was happening.  We respect the Deaf community as our children are a part of it and so we follow their lead, but we were all still confused.  Many parents stayed up late doing the research, reading the articles to get on board and so we did.  We supported the community the best way we could.  A meeting was called for the parents, teachers and community members to speak with the acting superintendent the afternoon school began.  We all adjusted our schedules to attend.  The sheer number of people at that meeting surprised me!  We listened and in true form, I could not keep quiet, so I gave my two cents.  Apparently, whatever I said made the acting superintendent give me a meeting with his boss.  He said you have five minutes to say to him what you want to get across, the severity of this issue from a hearing parents perspective.  I went to that meeting the next day, but I was not allowed to speak to the group.  His boss said no.  Therefore, I guess I am going to take my five minutes here.  It is all irrelevant now, since the superintendent has been reassigned and California School for the Deaf in Fremont is actively looking for a replacement.  However, I am going to give those five minutes I would have said then to the new person coming in.  I would have said and will say the following:

“This school is not just a school, it’s a community.  The authorities at CDE cannot treat it like other schools in its district.  As parents who are hearing with all hearing family members, this is the place our Deaf children go to be with people like them.  There is no one Deaf in our family and that this same for other kids in Heaths class.  This is their extended family, uncles, aunts, cousins, brothers and sisters.  This community needs to be heard, their concerns are valid and the morale of this community is at stake.  The future of our Deaf children is at stake.  If Deaf people leave this school to teach at other Deaf schools out of state, who will they be replaced with?  Will they be replaced with hearing people who specialize in D/HH kids?  Will the school close and our Deaf children be pushed into mainstream schools?  Heath is not ready for that.  He is still learning English.  There is no way he would survive with an interpreter.  With whom would he play at school?  Would he resort to being an introvert and play by himself?  He has such confidence in himself and to us it is a direct result of his being at this school.  It is not the same!  If my son experiences some sort of discrimination because he is Deaf, I can sympathize, but I cannot relate.  He needs to have a community to support him in his growth and development as a person.  He needs this community to help him deal with these experiences in life.  He needs people like him!  This school is not just a school it is a place for Deaf children to grow to their full potential and thrive.  This school helps them become the people they were meant to be.  People move from all over the country to be here at this school and you will see that change if the community does not support it.  Do the right thing and follow the lead of the Deaf people and their community.  We as hearing people owe it to the Deaf to treat them with the respect and listen.”

That is my five minutes.

And that is my perspective.

Many of us as parents make choices for our kids every day.  We feed them oatmeal for breakfast instead of cookies because we know it is what will start their day in the best way.  We choose to clothe them when we go to the grocery store because if not…well, we just do.  We choose to send them to school every day because we know it is what they need to be educated and to provide an intellectual foundation for their future.

However, when a Deaf child is born parents do not have the choice to know the Deaf community by the medical staff at the hospital.  Instead, we are cattle prodded to the audiologist and ENT surgeon who present us with options on the types of hearing aids we want to purchase.  The medical staff does not provide us as parents the choice to speak to a Deaf person who is a member of the Deaf community.  Would it not make sense that since we as parents are not Deaf and neither is the audiologist or the ENT surgeon, that they then give us an opportunity to speak to someone who is Deaf physically and culturally?

How can we as parents make informed decisions regarding the communication modality of our Deaf child without consulting the people who are experts at being a Deaf person?  It would only make sense we should have at least the CHOICE!  Nevertheless, that is not what happens.  What does happen is we receive paperwork, handouts and a few flyers that references a paragraph or two about the Deaf community and the challenges that it brings to US as hearing parents.

Do you know that when surgeons publish studies about positive outcomes of implanted children, they are tracking the actual surgery and the success of the implantation, not the success of the child’s spoken language development 5-10 years after implantation? This is not shared with us and because we trust the medical staff; we roll with what they recommend.  It makes sense in theory and I am not blaming parents for doing what they think is best with the information they are given.  Who am I to judge other parents for their choices?  However, some hearing parents choose to give their Deaf children ASL.  There are many of us out there and we need to share our stories.  It’s hard for me especially as l make my living by supporting the technological advances in medicine and support surgeons who save people’s lives with the technology my company has produced.  With my experience, I have many perspectives, medical, technical and social.  However, even with this knowledge and understanding, we still chose not to implant our child and we chose to give him a language, culture and community.

The AG Bell Association, an organization focused on listening and spoken language for deaf children, had their annual meeting last week.  Meredith Sugar their President gave a public address at the convention, which sparked a lot of discussion on social media among the deaf community.  Meredith is a hearing person with a deaf child.  I think an oral deaf person would be better suited for this position.  It is strange to me that hearing people continue to make decisions for what is best for deaf people.  I feel compelled to address some of her statements in the public address she gave at the conference.  They are here below:

She states: MOST OF YOU, I BELIEVE, and SHARE MY VIEW THAT THE TIPTOEING AROUND IS DONE. THAT THERE IS ABSOLUTELY NOTHING, NOTHING WRONG WITH FINALLY SAYING, ALBEIT RESPECTFULLY, THAT WE SUPPORT THE GOALS OF FAMILIES TO EQUIP THEIR DEAF CHILDREN TO LISTEN AND SPEAK…..ACTUALLY, TO HEAR WHISPERS, TO SING (IN TUNE!), TO HEAR SOUND UNDERWATER AND WIND BLOWING IN THE TREES. THE BAR HAS BEEN RAISED.

My response: What about the children that you instruct in listening and spoken language and still cannot hear whispers, sing, and hear sound underwater or the wind blowing.  What do you do with them?  What option or CHOICE do you give those parents?  Where do you send them when LSL does not work?

She states: THE SPEECH BANANA IS NO LONGER LOW-DECIBEL ENOUGH…..BEING TOLD THAT LISTENING AND SPOKEN LANGUAGE IS AN OPTION AS THE LAST ONE IN A LIST OF FIVE, IS NO LONGER PROFESSIONAL ENOUGH

My response: Listening and spoken language is not the last one in a list of five.  It is the first one and sometimes the only option given.  I am not sure where she is gathering this data.

She states: HAVING four LSLS IN A STATE OF MILLIONS, AND BEING TOLD THAT OUR DEAF CHILDREN MUST USE, OR BE TESTED IN, SIGN LANGUAGE, And ARE NOT TOLERABLE

My response: This statement regarding the SB210 bill in California is false.  I personally attended the first meeting where all of the heads of the California deaf and oral schools agreed upon the terms of the SB210 bill.  There were oral schools alongside bi-lingual deaf school reps supporting the language acquisition of deaf children and supported these children be tested in their method of communication whether that is English or ASL.  Lead-K and SB210 is about being kindergarten ready.  Testing to make sure children do not end up behind their peers.  It is not about testing deaf children in sign language.

She states: I DON’T GO AROUND TELLING PEOPLE ABOUT JONAH’S SUCCESS TO BRAG, OR BECAUSE I WAS SOME SPECIAL KIND OF MOM. YOU SEE, JONAH’S NOT AN ANOMALY. HE DID NOT JUST “GET LUCKY” AND HIS MOM DID NOT JUST “ROLL IT ALL ON RED.” THIS TYPE OF SUCCESS OF DEAF CHILDREN IS NO LONGER THE EXCEPTION – IT IS BECOMING THE RULE. KIDS ALL OVER THE WORLD WHO ARE TAKING THIS LSL PATH AND WORKING HARD ARE ACHIEVING THESE RESULTS. MOST MAINSTREAM BY FIRST GRADE.

My response: Kids all over the world are working hard to listen and speak.  Why make them work hard every day to conform to their hearing parents.  Why? Because it is easier for us… because then our deaf child will be able to fit in at our family gatherings, fit into our mold.  Why not let the child just be the child.  Many parents cannot just accept the blessing we have been given.  In addition, the last statement MOST Mainstreamed by first grade.  What happens to those who are not mainstreamed by first grade?  Where do they go?   I want to know about the non-success stories, where do they go?  Let us worry about the other kids who are not in that “most” statement, they have to be cared for as well.  It is almost like they are being swept under the rug.

She states: I’LL TAKE THIS FURTHER AND, I REALIZE IT IS NOT QUITE A PERFECT ANALOGY, BUT I COMPARE IT TO A CHILD BREAKING THEIR ARM ON THE PLAYGROUND. AT THE E.R., THE DOCTOR DOES NOT START BY SAYING, ‘WELL, YOU HAVE OPTIONS HERE…..ONE IS ACUPUNTURE…..ONE IS MASSAGE….AND OH YEAH, THERE’S THIS THING CALLED A CAST.” THE CAST IS THE STANDARD OF CARE. NOW, IF THE FAMILY HAS VARYING BELIEFS OR DESIRES, THEN FINE, THE OTHER OPTIONS GET CONSIDERED OR FOLLOWED. HOWEVER, THAT CAST IS MENTIONED FIRST AS THE STANDARD OF CARE. WHY OH WHY DO WE FEEL SOME SORT OF GUILT OR TREPIDATION STILL ABOUT MENTIONING LISTENING AND SPOKEN LANGUAGE AS THE VIABLE OPTION FOR OUR CHILDREN?

My response: Really, is she living under a rock.  #1 breaking an arm is nothing like being a Deaf person… period.  #2 listening and spoken language is mentioned first at least in the circle of people I know.  ENT’s and audiologists are trained to give listening and spoken Language as a first option.  ASL is at the bottom of the list and is viewed as a last resort.

The rest of the speech I cannot even address!  I however, will say this, now that the world is being educated nationally on what Deaf really looks like, with the successes of some Deaf people (Nyle Dimarco), now the AG Bell Association wants to take the stand that they have been silent all these years and are currently the victims of the Deaf extremists.  Enough already.  Let the Deaf community have their moment and let us make sure that the children are ready to face the world with a robust language before they go to kindergarten.

In the end, CHOICE, it is a matter of perspective.

And that is my perspective.

I was on a week long business trip that Jon joined me on which was great for us. But, we always miss the kids when we leave. Hanging out and doing nothing when we get back just brings us closer together and makes the kids feel good. Yesterday we went to the pool, ate lunch and spent the entire afternoon there.  We were just sitting around chatting and Heath started telling us how the caterpillar becomes a butterfly. He starts by saying that the caterpillar eats and eats and then gets into his cocoon. He hangs there and then one day becomes a butterfly.

And that is my perspective.

I’m just always amazed at how he paints the picture in his head and tells us the story at 3 years old. I’m sure he learned this story at school! So grateful for the amazing education he is receiving in ASL.  It’s so easy and natural for Deaf kids. I just don’t get why people would deny Deaf children this right. It doesn’t make sense to me. He ends the conversation with his favorite counting rhythm. I’ve shared this before but it’s always so cute!

I asked Jon to give me some points he wanted to highlight about himself and he said, “All people need to know is that I’m incredibly good-looking.  Get that point across.” HAHAHA!  Which he is, but he is definitely more than that.  So, I am obligated to give my perspective of the glue that holds this family together.

As in the last three posts, the word I would use to describe Jon would be selfless.  While he has amazing qualities overall to me that stands out the most.  When we discovered Heath was Deaf, he made the decision that staying home to raise Heath and Presley would be the best for the family overall.  Despite his desire to contribute financially to the family funds he sacrificed, his own wants and needs and put Heath’s first.  It was at that moment I realized who I chose to live out my days with.  People say that a person’s true character is revealed when (excuse my French) the shit hits the fan.  I remember clearly that he said, “I will do whatever it takes to make sure he has a safe environment to grow in”.  Leaving him with someone all day, every day, with someone who could not sign was not an option for either of us.  Since my work was more stable, he sacrificed himself and allowed me to pursue my career.  In my opinion something that is rare in the men that are in my life both professionally and personally.

My belief is that Heath is thriving and growing not only from the support of his Deaf family, but also his growth is directly related to the fact that his father can communicate with him.  Studies have shown that less than 10% of hearing fathers can sign fluently with their Deaf children.  Jon refused to be a part of that statistic.  While it is still difficult for both of us to sign fluently as the English rolls off our tongues, we still have a meaningful relationship with Heath and that was very important to him.

Not only is he selfless, but he is incredibly witty, fun and engaging.  He loves music, motorcycles and actively pursues any free time to veg since he’s with the kids A LOT!  He’s a man of few words but when he does speak, it’s quite thought out and respectful.  He’s the exact opposite of me, which is great!  I can truly say that the three of us are truly blessed to have him as our husband and father.

And that is my perspective.

Describing Presley in one word is quite difficult. But, if we had to, it would be a communicator. At 12 months of age Presley had a clear vocabulary of over 50 words. It was quite amazing. At first her doctor laughed at us during that 1 year check up when we told him she could say that many words. However, when he heard it for himself, he was amazed.

She’s a person with an opinion and a vocabulary to back it up. She starts talking the moment she wakes up to the moment she goes to sleep.  ASL is challenging for Presley since English is her first language and so she struggles expressing herself with her hands she prefers to use her voice. But, she knows that if she wants to communicate with her brother she must sign. It’s a daily challenge for her, but we think as she and Heath grow together he will guide her along the way.  She’s a loving child, very considerate and thoughtful.  She had a great first year in kindergarten and loves school. Let’s hope this continues. Ha!

Whether Presley realizes it or not, she has had a major hand in Heaths journey. Her command of the English language and understanding of it early in her years helped us realize that language is key for brain development. We knew what the brain was capable of because we already had an older child who was advanced. But, there was a sinking feeling in the back of our minds that it wasn’t just going to be the same for Heath. Her development assisted us in making the choice that ASL was going to be the easiest way we could get the language into Heaths mind.  Our audiologist and our ENT surgeon urged us to use spoken and oral methods. Encouraging us that ASL could hinder his speech development.  We kept asking how do we know he’s hearing the words. We didn’t have the answers, they didn’t have the answers and we weren’t willing to take a chance. What happens after three years and he still not speaking or hearing or communicating.  We didn’t want to waste any time guessing. HE was more important than fixing the “problem”.

The easiest thing for all three of us would be for Heath to use hearing aids or a cochlear implant to communicate with us. But those options just didn’t feel right. We don’t judge other families for choosing them. It just wasn’t right for us.   And there was that continued question what if they don’t work!

So thank you Presley for being so smart! You’re just as important on this journey as everyone else and we love you.

And that is my perspective.

What I thought would be cool is everyday for the next 4 days. Introduce each one of us to the audience.  I think getting to know us more might help you understand our choices and this journey.  Today I thought I would start with the whole reason why we are here. Heath.

He was identified as a Connexin 26 gene carrier. What does that mean?  Connexin 26 (Cx26) is a protein found on the (GJB2) gene and is the most common cause of congenital sensorineural hearing loss. Connexin 26 mutations are responsible for at least 20% of all genetic hearing loss and 10% of all childhood hearing loss.

In other words he got it from us!  It’s an interesting fact but that’s all it is, just a fact. As parents you want answers and so we got our answer as to why he’s Deaf. Many other parents don’t have that “luxury”.  However, it helped us just move on to the more important things, communication. But anyway, back to Heath.

If we were to describe Heath in one word it would be determined.  He knows what he wants, when he wants it and how he’s going to get it. Many would say that is how all 3 year olds are.   But to us, there is something special about him.  We haven’t quite put our finger on it but there is definitely something there.

He loves puzzles, cars and trains.  He describes them in detail and has quite an imagination on how cars and trains all crash and burn at some point. ha!  It’s amazing to see what the brain will do when given unrestricted access to language.

He’s quite social and is interested in knowing everyone’s name. He mentioned to us at one time when I told him I didn’t know the Starbucks baristas name, everyone MUST have a name. I laughed and asked her and then Finger spelled it to him. We wholeheartedly agree a name and an identity is important!

We’ve taught him the difference between being Deaf and hearing. After signing that he’s Deaf he does the sign for proud. And we encourage it. The confidence we build in him now will prepare him for the challenges he will face in the future. We think he gets it but time will tell.

His BFF is quite the determined toddler himself and seeing the two of them communicate is always entertaining. What’s amazing is that their friendship is meaningful because they have a real language to communicate in.

Heath is a full time enrolled student in the pre-school program at California School for the Deaf in Fremont and is thriving. He’s got friends, a language and a support system to build a foundation on for years to come.  He is truly a fortunate Deaf child!

And that is my perspective.

There’s a lot to share on this journey called life. But when life throws you a curve ball and says… Nope your life as you know it will change forever, you can embrace it or you can deny it. Our small little family of three decided to embrace the gift of our fourth member with open arms.  We are a family who has embraced ASL (american sign language) and all  it brings. It’s culture and identity being at the forefront.  I think we are ready to share our journey with the world.  It’s  time for our  Facebook page to move into a space of knowledge for the masses. Will you join us? I hope you do!

And that is my perspective.