Our Hearing Loss Journey Continues

I honestly am not sure, because I haven’t gone back through my posts, what I have shared or when I last shared, about our journey with our youngest who has hearing loss. I think it’s been stalled as we are still towards the beginning, and there also seems to be so many stigma’s surrounding many things in this world that opened to us.

Right away, I jumped into everything I could, I didn’t care that she was just a baby, I wanted to connect to other families, hopefully find some with babies as well so we could connect and they could be friends growing up. That didn’t exactly happen, but I did met a lot of amazing families and people along the way so far.

We found out day 1 that she failed her newborn hearing screening, and it’s been a ride since then. She started wearing hearing aids 1/24/18.

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We got set up with a hearing specialist and then we got hooked up with a Deaf mentor. SOOOOO many appointments in home and out of the home. We learned that while other kids who have normal hearing pick up many words in conservations around them, even with hearing aids, that is not possible for Arizona. So you have to repeat things to her. We have had to talk to her slightly different, like “Do you hear the water for the bath, let’s go take a bath, it’s bath time, do you hear the water?”. I don’t know about you, but I never talked that way with my other three kids lol. But with hearing loss, it’s helping them to learn the sounds and make connections to what they are for and getting as many words into her little brain as possible.

Well fast forward, and she has tubes and is now 14 months. We also moved, so I feel like we are starting all over in a sense. We just had her first appointment with her case worker here, we will start weekly therapies with a speech therapist, and will soon have a teacher of the Deaf to help us back with sign language also.

Since this journey started I have had a heart for wanting to be an advocate for hearing loss/deaf children. Advocate? What? Yes…I feel like somewhere along the way, even with all the people that are involved from finding out through 3 years, and maybe even beyond, something gets lost and never told to the parents. Not just something, multiple things! After my appointment yesterday, a fire was lit!

What wasn’t told to me at any point? That hearing aids, while the hope is that they help give as close to “normal” hearing as possible, that there are times they make things worse and it’s better to just not have them in. That even though people can be in the same hearing loss level, they can still hear slightly different, and aids can still be different for them. Some people get a ringing in their ears, some people have a different experience from one day to the next, the list goes on. There is no “fix” for everyone.

I feel like sign language is something that is left off the table. While not necessarily said, or at least not by everyone, it seems as if the goal is just to make sure they can hear and speak correctly. I have had things said by our hearing specialist, and while I truly believe she didn’t mean anything bad/negative by it, that demeans sign language or the need for it. Yes I said need and I will get there. But telling me that with her hearing loss between her aids and lip reading she will be just fine. Here is Spokane, the biggest resource is a school that focuses on spoken language. So much so in fact that they will even cover their mouth to test the kids. If you could see my face right now, or when I was told that, I just…I just can’t. Now..that being said, if a person’s choice is to help their child or test hearing as in what is being lost, I get covering a mouth. And I will leave that there.

Lip reading…oh let me count the ways. Did you know that lip reading takes a lot of work on the part of the person who is lip reading? There are so many factors, and if you talk to people who are hard of hearing and/or deaf they will tell you not everyone can do it. There are still words that will be missed, if someone has a mustache and/or beard that makes it more difficult, group settings are not ideal at all for lip reading and staying caught up in a conversation (in fact you have basically excluded them). I could go on. So to just toss it out there like it’s no big deal and something anyone can do is frustrating!

I am struggling with our daughter wearing her aids right now. Sometimes, like today, she let’s us just put them in and she will keep them in. Other times, like yesterday she fights tooth and nail the minute we even try to put one in. Sometimes as soon as one is in and we are working on the other she grabs the one out. Ugh….she has even figured out how to get them out without using her hands! Well, this got brought up in my meeting and I was told this isn’t normal since she’s worn them from a young age and I cut her off and said no, it’s normal. I confirmed with other people who have had little ones or do, and with my audiologist. Well, she still stands firm that it’s not normal and I need to make sure she wears them….I have heard from everyone whose focus is hearing/spoken language that she needs to wear them at all waking hours since we started this journey. I do understand, but again, so many factors.

Did you know just wearing hearing aids makes a person exhausted? Again, up above the same person can have a different experience for different reason two days in a row. Who knows what is bothering her the days she fights so hard, she can’t tell us yet. So no, I will not force hearing aids to be worn at all waking hours.

My choice after my research, and not just taking everything for granted that is told to me, is for a well rounded language..spoken and sign. When she is older and can tell us more of what she hears or doesn’t hear, she can decide if she wants to continue wearing the aids, if she doesn’t want to, if maybe there are days that bother her, if she wants to focus on sign only, wants to continue with both spoken and sign etc. Right now, my job as her parent is giving her every option possible that will help her keep growing and communicating with us. My job as a parent later is letting her carve her own path and supporting her.

What do I want our journey to do for others? I want others to be well educated. I want those who are involved in providing services to be well rounded and educated themselves so they understand the value of provided rounded language options and not just focusing on spoken. I want parents to be given all options, to know what their children are really going through before they choose just one path to follow.

I cannot at this point say how much, if any, spoken language Arizona is missing. I do know that there is a different in her interaction with her aids vs no aids. I know she is the happiest baby we have had. I know that she still hears us with out her aids. I know that she is finally picking up more signs and using them correctly. I know that she will be well rounded and able to make the best decision for herself later. I know she will be connected to the deaf community and not ever feel isolated like she is by herself. She will have friends she can talk to who will understand. That is one thing I can never do, I can never understand what it is like to be her, to not fully hear what is going on around me. That, is my reason for wanting to give her everything possible. I will not assume what she can and cannot hear. I will not tolerate her feeling left out, I will not allow her to ever feel like she is incapable of anything.

So there is our story to catch you up. My next posts, and maybe I will do more on youtube, will be sharing to educate more on hearing loss and the different aspects that go with hearing loss and being deaf. I will continue to share our journey and things that change etc.

While I cannot say I am an expert, I do know way more now that before we had little Arizona. Feel free to email me and ask me anything, esp if you are just starting this journey yourself. It can be overwhelming.

At the end of the day, just look at that little face, see their joy. They want nothing but to connect with us in every way, in our laughs, our sadness, our stories…make sure they can.

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Oh Little Peanut!

I didn’t realize it had been such a long time since my last update. I was 32 weeks and now little peanut is just over 7 months old!

The last several weeks of the pregnancy were rough. I went from bedrest and being able to work from home to complete bedrest in the same week. Little one tried coming at 33 weeks, so the goal was to get to me to 37 weeks. We managed to get to 37 weeks and then I was induced.

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She entered the world at 1:09 PM on November 16th weighing 8lbs 13oz. Let me tell you I do not want to know how much more she would’ve weighed had she baked any longer lol.

We soon discovered this little one, would start our adventure in learning sign language. She failed her first hearing test just like Makaylah, so I didn’t think anything of it at first, then she failed her second, but they said that it could still be fluid. So we went back to the hospital a week later, and she failed that test leading us to a pediatric audiologist. Sure enough she was diagnosed with moderate to severe hearing loss.

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She is absolutely perfect in our eyes. That day we were given the diagnosis, my head was spinning just a bit with everyone I was told we would be in touch with. At first I was very confused who did what. We see the audiologist regularly right now, a hearing specialist to make sure she is staying where she should for all her milestones and how we can help her, a case worker who sets goals every 6 months, her regular Dr/Pediatrician who has been great keeping everything together and up to date, and then an ENT because she has had fluid since day 1. We will be getting ear tubes very soon.

Fast forward to today and she is about 7 1/2 months old now.

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I have been able to go to a few events to help me connect to other parents who have child with hearing loss. I have attended an advocacy class, and I even started online ASL courses. I want her to always feel comfortable in her own home, and never have to struggle to communicate with us, or be exhausted from “communicating” all day out of the house and then just not want to when she gets home. This is her safe place and we will do everything we can to ensure she always feels safe, loved, and not like she is has to “work” to talk to her family.

When I was told I was pregnant, the day of my tubal procedure, I could’ve never imagined where this would lead us. I cannot imagine my life with her, and I cannot imagine not wanting to learn sign language now.

She was the blessing we never saw coming, and she completes my heart.