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My Daughter is Deaf

and that's ok!

Mainstreaming my Daughter

SchoolHouse

Hey y’all. I’ve been the busiest person on the planet lately. I’m serious, I am surprised I had time to even breath the past month! I am happy to be back in the writing seat to fill you all in on some exciting things happening in our household.

First off, my daughter WILL be attending Kindergarten in the fall! Yes, it is official. I have been really pressing in on some resourcing issues, and they have been approved for my little miss Alli-cakes. Things are run a bit differently here in our Atlantic Provinces, and I really just felt that Allison wasn’t the right fit for any of the typical resources available for mainstreaming her into school. We do not have residential Deaf schools, so mainstreaming is the one and only option. I see her signing capabilities improving by the second, and I was really concerned she would miss out on the language part, or the educational part. I wanted both to be equally accessed and that will be the case. YEEHAW!  She will have a Deaf Interpreter as well as a Hearing Interpreter!! So exciting.

The way this came about was such a journey for me personally, and spiritually. I really struggle with going against the grain. I’m an easy-peasy kind of person. When it became obvious to me that I was going to need to be my daughters voice, I struggled more than I was even aware of. The late night research, the long distance phone calls, the travelling, all paid off and in more ways than one. Although I did pray for the situation to work out for Allison’s benefit, I prayed just as often for my own growth, wisdom and proper words. I attend a weekly small group, where we discuss Sunday’s sermon, but we also have a time where we discuss our own personal lives, so these girls knew I was struggling (they probably could see me struggling more than I saw myself!) and one Sunday evening, a wise friend suggested that I maybe change the way I presented my side of the information, and propose a pilot project. I thoroughly liked the idea, and immediately did some research on proposing such a thing. Wednesday morning I was asked to attend a meeting with the organization who provides the resourcing. We sat down, and I was pretty excited to present my proposal. The woman in charge of the meeting began to speak, and quickly informed me that they would be having a PILOT PROJECT  for Allison in the Fall. You know the saying “weight lifted off your shoulders”? Yeah, that has a more physical meaning to me now. I literally felt an enormous weight (one that I had become so used to, I didn’t even know it was there) be instantly lifted. Not to mention a still, small voice telling me “See, Heather. I’m in this. I’m with you.”

This is no joke! I’m still giddy when I think about it.

Now, many have asked me about how this works? Why does Allison need a Deaf Interpreter and a Hearing Interpreter/Educational Interpreter ??  The DI will be able to bring the language of the teacher down to the level of Allison’s language, all the while challenging her to excel language-wise. The Hearing Interpreter, will be there to ensure the DI has access to what is being taught at the time. This means that Allison will be exposed to all the education her peers are being exposed to as well as increasing her language capabilities! Seriously an exciting time for Allison. Now, this also means myself and my husband will most likely be left in the dust very shortly after she starts in the fall..  Seriously, I’m not kidding.

Allison has been showing some pretty humongous leaps in language recently and its pretty stinking amazing to watch. She has been correcting my English signing with her natural ASL signing, and its amazing. For example, she had gotten a new pair of PJ’s with different size stars all over them. I signed “Little Star” “Big Star” and Allison smiled at me and proceeded to sign “Star” using a small sign, and “Star” using a big sign. I sat back and thought WOW. There is something innate in her that I just can’t feed. She is Deaf, and my goal is to ensure she is proud of herself. She knows that being Deaf doesn’t make her hearing impaired. She has Deaf gain. She was born exactly how she was suppose to be. She was brought into the exact family she was suppose to be.

Boy, has that little girl of ours taught some pretty big life lessons in her 4 short years. I can’t wait for her to be a life changing student at her Elementary school. I know there is so much more to come for this little lady and our family.

Mom of a Deaf girl xo

 

 

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Sadness

img_3406-4We go to church every weekend. I serve each Sunday morning so when we get the chance to go to church as a family on Saturday nights, we love it. My husband works shift work, so the options in services has really helped ensure we all get there on a weekly basis, but at the same time, we don’t always get to go together.
This past Saturday was a particularly different Saturday night service for me.
It felt the same walking in, if not better than usual. We are having a series focusing on marriage, so many new faces were there. That’s always great!
It wasn’t until I took Allison up to her 4 year old classroom to drop her off that my heart was broken.
We walked in, and Allison signed the same questions she always signs “Mom come soon? Mom Dad downstairs? Leland class?” And after answering the questions as usual, I turned around to walk out. For some reason I glanced back as I was heading out the doorway. Allison was standing in the middle of a full classroom, rubbing her nose as she looked around the room, blankly. I honestly had to shake myself into not crying. I was swallowing the large lump in my throat to spare my son from seeing his mom cry. Then I hear a little voice say “What’s wrong mommy?” Guess the swallowing doesn’t work with an in tune six year old….
Why WAS I so sad in that moment? I struggled with this feeling all weekend. I couldn’t shake my sadness. Then I would feel super guilty for feeling sad.

After a few days of praying, thinking, and talking it out, I have come to the conclusion that I am, in fact, a great mom. I’m allowed to feel these feelings. I’m allowed because I love these little people in my life more than I could imagine I could love. This little girl of mine is in a world where she is going to have daily situations where she is the one and only Deaf person in the room.
My sadness came from the fact that I, as her mother, am not able to teach her in the best ways possible how to handle these situations. Of course I support her identity, and give her instructions on how to handle this. But can I ever truly know what she is feeling? I can certainly relate to it, right? I can imagine myself placed in an environment where I couldn’t communicate with those around me, let’s use China for instance. I don’t speak their language….wait, that can’t work, because I would eventually learn some of that language, simply by hearing it around me ALL day…
there’s really no scenario I can come up with that would mimic what she goes through.

There it is.

The reasoning behind my sadness.

That’s it.

I am sad because she lives in a world that I cannot relate to, completely. She will always know I am there for her, and I have her back in every situation, but I am not Deaf. I do not know what that entails on the deepest of levels.
I am not afraid to stand up for what this girl needs and deserves in life, and I hope she will know that about me. One day, I pray she is even proud of me.

I don’t feel alone in this sadness. I’m almost positive other Hearing parents of Deaf children also feel it. My hope is that they can identify the truth behind their sadness. I have not yet once met a Deaf person who would want us Hearing folk to feel sadness for them. What does that say? That we are superior because we are hearing… do you want to give that impression? I know I certainly DO NOT. I was able to identify that my sadness was not for Allison standing in a room with peers she wouldn’t play with, communicate with, connect with for that hour, but I was feeling sadness for myself. That I am her mother and can never truly understand what her days are like. She is most certainly going to learn how to be Deaf in a Hearing world, I am going to make sure of it. She is going to grow up confident and self aware. She is going to learn to advocate for her self and her rights. She will grow in an environment where she is not encouraged to feel sadness for herself, but pride and thankfulness. I know this to be true, because I am willing to fight tooth and nail for it. But I’m her mother and I can’t completely understand. I can not be born Deaf. I can never know. As a mother, we want to be able to understand fully what is happening within our children (especially at this young age!) and how to help when they have these different feelings. We are suppose to be the pros, and I can never be her pro.

Another wave of sadness happened this afternoon when we were having some AAC (Augmentative alternative communication) training. I was just completely overwhelmed with this feeling of how my daughter has gotten to this point. I felt like a complete failure. She is doing SO fantastic, don’t get me wrong. We have worked very hard! But this AAC should be an added bonus on top of a girl who has a great foundation in language already. Simply a tool to help her communicate with others who don’t sign. I’m in total agreement there. How awesome is it to live in 2017!? But I’m saddened that I was not stronger, more educated, more demanding in her first years. That I didn’t have the passion I have now to ensure this lady has a first language, that she knows well. I felt sad sitting there. My 4 year old little girl, isn’t fluent in any language. She isn’t exposed to one certain language all day long by an expert (parent) who is fluent. She should be sitting here, in this very moment, learning how to use an iPad to communicate with her Hearing peers much in the same way her brother is learning to use it. He has a strong foundation in spoken English, so the added iPad communication works wonders! But instead it’s just one more thing thrown her way. Sometimes people want her to use pictures, sometimes people want her to use signs, sometimes people want her to use the iPad. Some people expect pointing and gestures. Sometimes people expect absolutely nothing. So this girl has many different people, with many different communication types always trying to get her to communicate in their way of choice. I understand children can learn more than one language from birth…. but don’t you think maybe Allison didn’t get to learn any one language to its fullest capacity, even yet, at 4 years old? I have friends who are Completely bilingual because mom spoke French and dad spoke English. They were exposed to 2 languages from 2 adults from birth who were speaking their mother tongues. Allison has not gotten that yet. 4 years in. I can’t give her 24 hour expose to ASL because it’s also a new language for me.
That’s why I was saddened today.
I watched her do her best with the iPad. She always does her best and does it happily. But these thoughts kept flooding in that I failed her and didn’t demand we focus on the one language that comes naturally to her from the beginning. As I sat there, I couldn’t help but think, had I known what I know now, that at this very moment I would be happy and excited to use an iPad to help in the classroom. Instead I am sad. And I think that’s ok? I really don’t want her only able to communicate somewhat in 3 different communication methods. I desperately want her to be able to express herself FULLY in one, fluent language, and then add the others. Today I cried in my car wishing I could turn time back 4 years and 7 months. If I could know what I know now, maybe things would be different for Allison. But unfortunately, my time machine isn’t working at the moment, so I have to keep pressing on in the direction I am going.

My daughter has a supportive, loving family. We accept her for her. We aren’t forcing her to be part of our world, but instead going into hers as deep as we can. When she is strong and confident in her world, I will teach her mine. English is so important to me. Reading. Writing. Also VERY important. I know I’m fluent in that area, so I have full confidence that I will be able to expose her properly to my language, when the right time comes.

We feel blessed beyond explanation that we were chosen to be her family. She’s our Alli-cakes. We will be here for her no matter what is thrown our way.
And Allison, you can be certain that this mother will feel sadness, for myself, from time to time, but it doesn’t change the way I feel towards you. I am not sad for you. You are perfectly made.

Mother of a Deaf girl.

Power of Passion

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Passion. It’s something we all have inside of us.

Language is so important to us as human beings and passion is one of the many reasons why. Imagine your most passionate subject? Now imagine not having the vocabulary to share that passion with others? Well for me, this happened very recently while having my weekly tea time with a Deaf friend. I was so excited to meet with her that day. I had SO MUCH I wanted to tell her, and I found myself fumbling over signs. Constantly dancing around the point because I didn’t have the right vocabulary for that subject. Many thoughts flowing through my head and only bits and pieces coming out. It was hard, guys. My friend was very kind, and was helping me learn new signs, and was teaching me how to properly emphasize what I was trying to say. I sat back a minute and thought OK Heather…This is good. You are learning some new signs here! This is what I need. An opportunity to really expand my vocabulary…. As we continued I continued to struggle, while my friend continued to help me. That’s when it hit me. I stopped and looked up at my friend. I’m sure I was a bit awkward for a minute, but finally I signed “I don’t want this for my daughter. I want her to express her passions with ease to me, and the world” My friend so nicely looked at me and signed “right”. It was a pretty powerful moment for me.

I want more for my daughter. I must constantly better myself to ensure I am above her in signing level, so she can learn while at home…. (this will change, because I am not Deaf, therefore she will surpass my understanding and lets not forget she is only 4 and already correcting me!! There IS a difference between butterfly and moth, mom!!!!!)

One reoccurring email I got from my last blog post, was about reading and writing. How would I be able to teach my daughter proper English grammar? I fully understand this is another subject that is seen differently among different groups. For me, this was a huge concern. I LOVE reading. Like, LOVE reading. I read to my babies before they were born. I read to them daily. We go to the library as often as we can. I can remember being a little girl laying in my yard reading, sitting on our stairs reading, laying in bed reading and I always loved doing the Summer Reading Clubs. So having my daughter be able to read and write is very important to me.

With my passion to read, I must tell you, I have researched many many many many topics about educating our little Deaf children. After all, I might be sending my girly off to Kindergarten in the fall (eeeeeek). In my research I have come across scholarly articles published by Deaf individuals that really focused on ASL as a primary language, and English being the second. For me, articles published by Deaf individuals really resonated something.. These people ARE Deaf. These people 100%, FULLY understand what being Deaf is like. Something I and other hearing people will never fully understand. The main point of a lot of these articles was to treat ASL as a first language, and English (my language) as a second. Now this made complete sense to me. I was in late French immersion. That meant I had to learn a whole new language AND its grammar. This was not an impossible feat! I really believe that once you have a strong foundation in your mother tongue, another language will be easier to grasp.  American Sign Language is exactly that, a language. It has it’s own grammar and syntax. If we support our children in becoming fluent in their first languages, then perhaps we can then move to having them become fluent in our language? It might just be me, but that’s where my research, personal language acquisition (English, French, ASL), and knowing my girl has set my mind to learning her language, to better her life. And guess what? It has bettered MY life as well!

Thank you all for reading and thank you all for the emails! Please keep the comments coming! It brought such joy to read them all!

Your Truly,

Mom of a Deaf girl

Blessed

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Hello!

I have always enjoyed writing my thoughts down in my journal. It’s so therapeutic, and refreshing.  There is something about writing down your thought processes and then reading them back to understand where you might want to change, or grow in those thoughts. But it is a whole new ball game when you write down your personal thoughts AND share them on the internet!

I plan on this being a positive experience, and a help for others who find themselves in the same position I am.

Some background on my little family. We consist of 4 humans, 2 canines and 1 feline.  My husband and I are high school sweethearts (awwwww) and have been married almost 9 years now. We have 2 amazing little children, a 6 year old boy and a 4 year old girl. We happily live in a small town outside of a small port city (it’s quite beautiful here!).

As you may have already guessed, I am using this blog spot to help parents who have Deaf children. My daughter was born into this world with CHARGE syndrome (I will elaborate on that in another post) and with that came her deafness. When she was first born, we were aware of her heart condition called Tetralogy of Fallot, and so that was where our focus was. She was failing hearing tests, but they reassured us that this often happens to newborns due to fluids and not to worry.

There. Right there.

That is most parent’s very first exposure to the Deaf world. Failure. Worry. Fast forward 5 months, and our daughter had grown healthily, and it was time for her open heart surgery to repair that toonie sized heart of hers. During this procedure we signed consent for audiology to perform an ABR test to see how her brain responded to sounds.

Blessing number one. Perspective.

The audiologist came to talk to us a few hours after our sweet baby girl had made her way into the PICU after her surgery. As my husband and I stood next to her, praising God for her life, the audiologist asked us to please have a seat. He explained what the ABR results were. That he was sorry to have to tell us, but our daughter was deaf. My husband turned to look at her cold, tube ridden body next to us and simply replied “OK”. In our minds, we were just happy to know she was alive! That’s what I mean about this being our first blessing. We had perspective. Being deaf did not seem like bad news next to open heart surgery. The audiologist was completely shocked at our reaction. He didn’t think we fully understood what he was saying and told us he would come back in a few days to chat to us again, once all this sunk in.

After a few months of recovery, and a major influx of therapies, we started on our road to “fix” her ears. All professionals seem to point us in the same direction – Cochlear Implant. We were thinking this was going to be a miracle, and our daughter would be more like us, and less like …. well … herself. (That comment is so far from trying to be offensive, it’s a thought that crossed my mind many times, and one that I pushed down because it was too hard to think about) We were uneducated as to what being Deaf meant, and we could only focus on the massive amounts of information being put in front of us. Who had to time find any MORE information with a 2 year old toddler and a medically fragile baby? Not this mom!

When our sweet girl turned 18 months old, we had major supports in place to help us get an Implant. We flew our family of 4 to Toronto, because that was where the best Cochlear Implant surgeon (who happen to be known for implanting kids with CHARGE syndrome, woohoo!) was located. We boarded the plane, thinking we would come home with some very exciting news.

Blessing number two. Rejection

The best of the best told us that he was not comfortable implanting our daughter. He felt the risk would outweigh the benefits and would not consider it again until she was at least 3 years of age.

Now, don’t let me fool you when I say this was blessing number two. I BAWLED. I was DEVASTATED. I was ANGRY. I was ready to FIGHT for this child to hear. I actually told the surgeon to expect us when she turned 3. We would be back and wouldn’t take no for an answer…. The blessing comes with the rejection and the healing that took place in the waiting.

The months to follow are quite hard for me to put into words. Being “in limbo” is the best I can do. That’s exactly what it felt like. I was determined that at 3, our girl would be implanted, but until then I needed help communicating with her. Of all the options given to us, we went with ASL. I had always been super interested in sign language, and we even tried a few baby signs with our son when he was born. So we thought we would go that route for the time being.

Blessing number three. Deaf community.

We were given a Deaf mentor to help our family learn sign language. He was going to come to our house and teach us as a unit! We were so excited, and extremely nervous. He was Deaf himself, and we didn’t know how on earth we were going to communicate with him. The first day he showed up to our door would change our lives forever. After almost 2 years of the medical model being our main source of information, we had a Deaf person right in front of us, not nervous a tiny bit to communicate with us, fully capable to provide for himself, able to contribute to society, able to show and receive love, able to…able to…able to….able to…. completely ABLE. There was no self-pity, no “woe is me”, but a happy man, working to teach families like mine because he had a genuine love and understanding for deaf children.

I grew to love this man and the time he spent at our house. I grew to love the teasing. Oh how he loved to tease me and my husband!!  Over the next year he taught us tons, and we were able to quickly leave the paper and the pens aside and communicating in sign. Unfortunately his health deteriorated, and he sadly passed away. He will forever hold a place in our hearts. He was one of a kind, and a major influence in our family.

Blessing number four. Mentoring Part 2.

Not having our Deaf mentor meant we needed another Deaf mentor. A member of the Deaf community stepped up and started meeting us for signing lessons. This was another person as an example of how being Deaf does not hold you back…Successful Deaf woman right in front of me. Happy with her life. Loves her children. Loves her husband. Loves her grandchildren. Drives a nice vehicle. Has a great job. etc etc etc etc. I was starting to wonder why the medical field was so negative about DEAF. Hmm. Getting to know this woman, I knew I could ask her anything at all. She knew I was brand new to the Deaf community and I’m sure she could see I was confused/worried/scared/frustrated. I started to explore what being deaf was, what it meant. Funny, our daughter would have been about 4 by this time and I still wasn’t sure what being deaf meant or what it was? Let me elaborate on my confusion: We had all these goals in front of us that just seemed completely impossible for a deaf child. “She needs to drop the block in the bucket when she hears the sounds. She needs to practice the ling sounds, etc”. How would she know when to drop a block if she couldn’t hear the sound? How do you practice “listening” skills when you are deaf? I was too afraid to ask in fear I would look uneducated, or look like I wasn’t fully involved in my daughter’s medical needs.

Blessing number five. Audiology.

Having now established a great support system and team for our gal, it was time to make up my own mind. I was so tired of feeling confused. In limbo. I was always questioning myself, and trying to understand something that made absolutely no sense to me. My first step was going to be getting out of my comfort zone, pushing my pride aside, and scheduling an appointment with audiology, not for my deaf daughter, but for myself. I would ask my “stupid” questions and get it over with.

Best thing I ever did. BEST. THING. I. EVER. DID. Audiology explained that Allison was Deaf. Hearing aids were not making a difference. Her growth over the past few years was incredible and she was certainly capable of learning. If she wasn’t doing the block drop test, it was simply because she had no sound to pair it with. Simple as that. She explained that if we wanted to continue to try adjusting hearing aids we could, and that option is forever there. Or we can simply be done fighting the fight to keep that sucker (hearing aid) in there. Good-bye hearing aid, Hello language.

Blessing number six. ASL

We had been signing as a family since our daughter was about two years old. She was learning some signs and we were so proud! I wanted to bring the language to the next level, and that’s where our Deaf mentor, stepped in and provided a service to us at the daycare. She would visit daily and help grow our daughter’s vocabulary and help the EA learn too. AMAZING. This was where I first woke up to the real human need for language. I’m so sad this wasn’t in my brain before this. I mean, come on, we all know language is important, but something just clicked when I started seeing my daughter learn to tell me about her feelings, about her likes, her dislikes, her day… She wasn’t simply relying on smiles, yells or cries to get her needs known…She was elaborating!

This drove me to learn more about language. With learning ASL, I learned about the culture. I learned about the hundred year old argument between the hearing world and the Deaf world. Finally my confusion made sense!!! It was the most freeing feeling I ever felt. I was able to take a stand and decide where we were on that hundred year old battle. My daughter is Deaf. That is OK. She will be a successful woman who contributes to society. She will, she will, she will. There will be no “cant’s” in her life. I will fight for her right to language. And she will grow up knowing that there is nothing “wrong” with her. She will be proud and confident in her own skin.

Blessing number seven. No Implant

When she was almost 4, the surgeon called me out of the blue. He said based on the scans he received he would be very concerned about the facial nerve. He said if he were to go ahead with this, he would only give us a 50/50 chance that she would have facial paralysis. He then listed the next risk, then the next, then the next. I was in a better place. I was understanding that it wasn’t “wrong” to be Deaf. I kindly told him that I appreciated his input and that we would decline going ahead for the next steps….. silence….. He then told me he thinks I am a great mom. I didn’t need validation that I had made the right choice, but wow, that felt VERY nice!

I plan on elaborating greatly on many of these areas, and the struggles I have had/am having. I will offer my point of view, and my main goal here is to help educate the parents. So that if you face the challenges I have, you can be fully aware that there are options.

For the record (back to that hundred yearlong battle) I am not opposed to Cochlear Implants at all. I am opposed to how they are presented. One sided. Only option. No other way. Made to feel less of a parent if you “deny” the child of hearing.. I have only recently gained enough confidence that I do not allow others to judge our family. We are denying our daughter nothing. No implant, or yes implant. Language is the key.

As you can see, I feel extremely blessed! I hope to help other parents of deaf children feel like they are not alone. There is no limbo. There is more to life than hearing/not hearing. We are all human. We all have the same goals/wants/needs. We should be in this together.

My daughter is Deaf. That is ok.

Yours truly,

Mom of a Deaf girl

 

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