Time for the serious business I talked about. This is the part of Kiddo’s story that I talk about now for educational purposes only. Kiddo no longer uses technology of any kind in order to hear. He likes his silent world and that’s where I’ll let him stay.
Many moons ago, (okay, so it was 6 years ago this past month but who’s counting?) I was told to pick colors for ear molds that would be stuffed in Kiddo’s ears for the rest of his life (hah, how little they knew my child then) and attached to these battery-powered things that would hang behind his ears to help him “hear.”
Let’s go further back.. to the VERY beginning when all I knew was that Kiddo had “failed” his newborn hearing screen. First and foremost, let me say this: my child did not fail a thing. He PASSED his deaf test. Yes, according to the hearing world, he isn’t normal. According to a lot of people, he is broken and needs to be fixed. According to me, he’s perfect. He is EXACTLY as God intended him to be. If you want to go back even further, when I was in Junior High, I learned the manual alphabet. I learned some, not much, conversational sign language. Want me to get really honest? *I learned dirty words in ASL…….* Shhhhh.. I was in no way prepared to have a Deaf kid… but I at least knew that I absolutely loved ASL and my thoughts on deafness and ASL were that ASL was the language that was most natural to the DHH crowd and I wanted to learn so that I could communicate effectively with anyone I came in contact with who used it. And like most people with good intentions, that’s about as far as I got. Until college. Where I became friends with some people who were Deaf, who communicated using sign language and who I wanted to be able to actually cultivate relationships with. So I learned more. I practiced. But this is a language that if you don’t use it, you lose it when your primary language is English and you stop thinking in ASL. wow… the rabbits I chase….
One more time… 3 days post-birth, Kiddo “failed” his hearing screen. The nurses at the hospital told me that their equipment was old and that’s probably why he failed so bring him back when he’s 7 weeks old and we’ll try again. So I did. He failed again. Again they said that their equipment was old and that was all it was most likely. They told me to call an audiologist and have him evaluated. In the meantime, Early Intervention has called me. Three times. Over the course of the 7 week wait, they managed to call me three times. I spoke with the same woman every single time. Every single time, I explained that the hospital told me to wait until he was 7 weeks old and bring him back in to recheck his ears. Every. Single. Time. Yet they continued to call. At this point, I’m incredibly annoyed with the EI people and I’m waiting to figure out what’s going on with my son. This was probably the longest 7 weeks of my life. Not because I was upset at the possibility of him being deaf; that part actually didn’t bother me. It was the constant searching the internet to find reasons as to why a newborn might fail their hearing screen. Let me say this too… Mommas have it pretty good these days. I recently gave birth to a gorgeous baby girl and let me tell you what… I was shaking like a leaf while they had her hooked up to the ABR. We didn’t get such a thorough test for Kiddo. And since this is nitty gritty post about deaf gain ((not hearing loss)) I’ll tell you I was shaking because I expected her to pass her screen and that freaked me out. Now, after this last test with Kiddo, I called around, got recommendations and eventually just asked my pediatrician to send me to the best audiologist she knew of who would best fit our family. I called the audiologist that she recommended and set up my son with an appointment for the nest week. Here we go.
At 8 weeks old, my son was rushed to the ER at our children’s hospital, on oxygen, due to RSV. That is something I would never wish on any parent, ever, especially not a first time Mom. That was the most terrifying experience of my life. For the next 48 hours it was IVs and wall suction every 2 two hours and oxygen tubes being held under my sweet baby’s face to try desperately to get his O2 saturation up. Here I had been worried about what was going to happen with his ears or if there was something worse that was wrong with him and I could very possibly lose him to something as simple as RSV. For a baby, RSV is no joke. In the middle of this, I reluctantly leave the hospital to come home and shower and take a nap and get his room ready for his return. We were about to spend the next 2 weeks in his bedroom alone and not venture out ((well, I could leave the room to use the bathroom but that was it)) and the next two weeks after that, still inside our house. Now, my son was born in October so when this happened, it was the beginning of January. It was freezing outside. Ordered to stay in? No problem! Perfectly fine with me! ((two weeks in, I was ready to pull my hair out… but I digress..)) In this short break that I took, which involved me disinfecting every inch of his bedroom, I called the hospital three I times to talk to the nurse on the pulmonary floor to make sure he was okay. I had slept maybe 30 minutes total in the last two days. I was utterly exhausted. Just as I laid down to try for a quick nap, the phone rang. Yes, 6 years ago I still had a landline in my home. Crazy, right? I answer. Guess who it is! Can you guess? Just a shot in the dark… a wild guess..
It was Early Intervention!!!!! These people who could do nothing but ask me over and over again why my son hadn’t been evaluated yet when he was 3 weeks old, 5 weeks old and 7 weeks old. No one had given us a for sure diagnosis because we had to play the waiting game for weeks. His appointment was set for the next day but there was no way that we could go to the audiologist as we had to be in Kiddo’s room for the next two weeks. Remember now, I’ve slept 30 minutes in 48 hours. This woman started off on the wrong foot with me when she called. Here’s how this went… *names have been changed to protect… well… no one really… but it’s been 6 years and we’ve met tons of people and I honestly can’t remember her name now… Hah! And I always refer to Kiddo as…..Kiddo… so…. there ya have it… enjoy..*
EI: “Hello, this is Barb with Early Intervention. I see that you still haven’t updated us with a diagnosis of hearing impairment ((*cringe*)) for your son. Can you explain to me why you haven’t taken him to an ENT or do I need to alert Child Services?”
((adding: yes.. what you just read is what the woman from the agency that is supposed to HELP US said to me. I might not remember her name, but I sure won’t ever forget our conversation.))
Me: “He has an appointment scheduled for tomorrow to see an actual audiologist rather than an ENT, which is what I told you a week ago when you called. However, he’s not goi-…”
EI: “Excuse me? He has an appointment but yet you’re not going to take him to it?! What, you don’t want him to get the help he needs and deserves? I’ll be alerting Child Services.”
Me: “That isn’t necessary, ma’am. If I could have finished my sentence, you would know that I plan on rescheduling the appointment for 4 weeks from now.”
EI: “What could possibly be more important than your child?! Rescheduling is unacceptable. He has to go to the doctor and be diagnosed so that we can step in and do what we need to do. You can’t reschedule his appointment. What a terrible mother you are. I feel bad for your child and any other children you might have in the future. What’s the name of the doctor you are using? I’ll be calling his pediatrician myself to alert them of your noncompliance.”
Me: “Look, lady, I have slept 30 minutes in the past 24 hours. The only reason I’m here and can take your call is because I came home to shower and disinfect my kid’s room and, if at all possible, catch a quick nap. My son has been in the hospital and on oxygen off and on. I almost lost him due to RSV. He’s coming home today and the doctor at the HOSPITAL instructed us to stay inside and isolated to one room for the next two weeks. We are not to leave our house for the next FOUR weeks. Whether I want to take him to the audiologist or not, I CAN’T. I WILL NOT let my child DIE just because you people have no patience!! Y’all are absolutely ridiculous. This is now officially harassment. I won’t stand for being threatened. You wanna send child services to my house, send ’em. What they’ll find is a bunch of paperwork from my kid’s pediatrician and discharge papers from the hospital, whenever we finally get them, with orders to be isolated for four weeks! If you wanna be a female dog, you better do it to someone else! Not me! Not today! I am so sick and tired of you people calling me over and over again and questioning my motherhood when I have done absolutely everything I have been told to do! I have your number, I told you that the last three times that you have called, and I told you from the start that once I have a diagnosis or an answer to what’s going on with his hearing, I will call you MYSELF and let you know!
EI: “Well, I didn’t know anything about that. You don’t have to yell.”
Me: “Of course you didn’t! You didn’t ask! You went from 0 to 60 in .25 seconds and threatened to send CPS to my house! I want the name of your supervisor. Now.”
EI: “That won’t be necessary. You know, you’re extremely rude. You might want to think about how you talk to people in front of your child.”
Me: “Did yo-.. No, ya know what… I’ll call and let y’all know what the audiologist says when she sees my son in a month. If you call me between now and then, I’m reporting it to the police as harassment. Have a great day!”
Pretty sure she hung up after I said I was going to report it to the police. Needless to say, we got no help from Early Intervention. I honestly don’t even know if she reported his deafness to the state like she was supposed to. 6 years later, I’m still not sure. Hah! It was absolutely ridiculous. I never, in my wildest dreams, thought that I would have had to deal with something like that right out the gate. But, boy, did it set the tone for the rest of our journey.
4 weeks after us being stuck in the house, with some incredible cabin fever, we ventured out to the audiologist. She is most definitely the greatest doctor we have ever come in contact with. Sweet as could be. Genuinely cares about her patients. Wants to give you the best options possible, even if that means that no aids are the way to go. She was so helpful, so wonderful. She did the same test that the hospital did. The one that blows air against the eardrum to see whether or not there’s reverberation. Nothing. Both ears. She thought that maybe it was because of the RSV now and that he could possibly have fluid on his ears. So she scheduled us for an ABR ((Audio Brainstem Response test)) at the hospital and told us that it would give us a definitive answer as to whether it was fluid, the machines or he was actually deaf.
Off we go to the hospital. This test was supposed to last 45 minutes. Oh boy, were they wrong. Yes, the ABR itself lasted 45 minutes… but it took 2 hours to get Kiddo to fall asleep. Lots of crying, shushing, snuggling and a warm bottle later, we finally got started. I was sitting across the room from him and his sperm donor. They had hooked electrodes to his head to measure his brain activity as sounds entered his ears through these soft, squishy little earbuds. I could hear the sounds across the room as if the earbuds were in my own ears. I looked at the screen to my left and there was nothing. These super loud noises that I was hearing, he couldn’t hear at all. The test was over and the technician said, “after I give you the big news, you won’t hear anything else I say so here,” as she handed me a folder with what felt like an entire tree worth of brochures and papers explaining all the different resources (not for the state we live in, mind you) to help us along our journey of deafness, “are resources. Go over them when you get home or tomorrow or a few days from now. Give yourself time to process. Everything will be okay, I promise. This is not the end of the world. Your son has severe hearing loss in one ear and severe/profound loss in the other. He can’t hear you speak, he can’t hear much more than very loud noises. Be careful walking up behind him, as it may scare hi-…” and that’s about when I stopped listening. The tears immediately flowed. I couldn’t stop them. Spilling over my cheeks, hot and wet and a long time coming. But these weren’t tears of sadness. These weren’t tears of grief. These were tears of joy. You thinking this is weird? Hang on.
I cried that day because my boy was alive. He was healthy. He was happy. So what if he couldn’t hear my voice? He could feel it. I had seen that at night, rocking him to sleep and singing to him and his tiny little hand placed on my throat. He was going to be okay. My head raced with, “where do we go from here?” thoughts. At the forefront was learning ASL. How were we going to do that? Would we need to take classes? Were there any classes for babies? Did I need to become fluent before I could teach him anything? This is what I’m going to do; I’ll meet him where he is. Deaf = ASL so where do we start?” That was why I didn’t hear a word the technician said.
Kiddo’s sperm donor? “It’s your fault. You smoked while you were pregnant. You did this.” Then tears flowed for new reasons. The technician stopped him in his tracks. “Do not blame her. This isn’t her fault. Smoking doesn’t cause hearing loss. This could be genetic, it could be conductive, it could be anything, Don’t blame anyone. This is no one’s fault.” Don’t worry, it took him a few months and he was gone. He comes around now and then but the negativity is gone.
Kiddo’s audiologist wanted to fit him for hearing aids. I was flying blind. Whatever the doctors said, that’s what I was going to do. Unless anyone mentioned Cochlear Implants. In which case, I stood up. Absolutely not. Not my kid. Not now. It’s not my body and that’s not a choice I will ever make for him. If he wants to be implanted, it will come when he can be fully aware of what all comes along with it, the risks and is able to make a well-informed decision about something being surgically attached to his body. it will be his choice and his choice alone. This is not to say that I won’t support him if implants are what he chooses later on, I will. I will stand behind him and be there every single step of the way. But I just won’t pick that life for him.
So here we go, adventuring into the world of the unknown. The world of sound. Possibly. Access to the hearing world. Kinda. We learned ASL with the help of Rachel Coleman and Baby Signing Time at first. He signed his first word, “bug,” at 5 months. He thought it was funny. We moved to Signing Time and have watched and own every video. We now watch Rachel and the Treeschoolers but don’t own them all yet. There isn’t as much sign in them. We got ear molds and picked colors for his new ears. We went through test after test in soundfield to get them just right. We spent hours and hours and hours fighting about wearing them. Started with 5 minutes twice a day. Then 10 minutes three times a day. He would go a week at a time, asking for them to be on. Then the next week not want anything to do with them. We went back and forth and back and forth. He screamed and cried and HATED wearing them. He HATED getting new molds made. He HATED everything about this experience. And yet, I was told to persist. I wasn’t connected to the Deaf community. I wasn’t connected to anything or anyone. Early Intervention left us in the dust after I called to tell them that he was, in fact, diagnosed with a hearing loss. I was all alone. I have never, in my life, felt more alone than I did for the first two and a half years of our hearing aid adventure. I put him in speech therapy because that’s what I was told to do. It was trial and error finding a therapist that knew sign or was at least willing to learn. If a therapist ever tells you to interpret for your kid, walk out. First of all, it’s unethical for a professional to have a parent interpret and second, it’s illegal. They are to provide an interpreter for your child. On their dime. That stands for all medical professions. Including hospitals. We’ll get to that story in the next post. After 11 months of speech and 1 word acquired, we lost our therapist to a better job for her. Don’t get me wrong, we were THRILLED for her!! We still keep in contact! She has since married the man she got engaged to while she was Kiddo’s ST and had a BEAUTIFUL baby girl and is pregnant again! We love her. We miss seeing her weekly. The therapy group that we were with wanted to switch us to a therapist who would not accept sign as an answer ever and knew no sign language and was unwilling to learn. I pulled him from it and decided that English was not going to be the way we were going to go. The hearing aids brought him up to moderate loss, at best and gave him no access to spoken language anyway so what was the point? We tried Ultra powered aids when super powered aids stopped working for him. We got a little better speech access at first but then he kept telling me that they hurt. I asked which part hurt and he would point to the aid itself rather than the ear mold. I was done. I couldn’t take hurting him. I stopped using them then. Again, what was the point of doing all this? To make him more like us? To force this on him when at every turn he fought it tooth and nail? No thank you. I was done forcing him to do anything. I stopped forcing the aids on him. I stopped trying to teach him anything but ASL. Then we found our home.
Deaf Family Literacy pulled us in close and carried us. I finally wasn’t alone. I was with a bunch of parents who used tech for their kids and expected spoken language but they were all open to ASL. Whether they had taught their kids ASL or were interpreters themselves or used it to fill in the gaps that hearing aids inevitably leave, they understood. I hooked up with Hands and Voices, the Deaf community in my area, Deaf adults… I cannot begin to tell you the world of difference this made in me and Kiddo both. We found our people!
We went in for Kiddo’s yearly hearing evaluation and the look on his audiologists face concerned me. We were now with a different audiologist who had previously been a student. She called in our original audiologist and they spoke to each other on the other side of the glass as Kiddo and I sat in the soundproof room. I couldn’t see what all they were saying but what I caught while lip-reading didn’t sound good. The original audiologist came in soundfield and told me to bring Kiddo and come to the family rooms. “Let’s talk a minute,” she said. We sat down while Kiddo played with all the latest tech that was on display and books scattered around the room. She handed me a box of tissues and lowered her voice. “It seems as though he’s lost the rest of his residual hearing.” For the first time ever, I heard that he was a candidate for a CI (Cochlear Implant) because she had NEVER mentioned that it was even an option for us at any point. Another reason I love her. She said that, knowing Kiddo, she wouldn’t recommend CIs for him. He had serious tactile issues at this point, struggled with OCD and honestly enjoyed his silence. This was it for us. Our tech journey had been over anyway but this was that final nail in the coffin on tech. We were done. It was over. And then came defending my decisions all over again. I have spent the majority of my child’s life defending my choices for him. Defending not implanting him when he was tiny. Defending his lack of hearing aid use. Defending his ASL. Defending his abilities. Defending his intelligence. Defending him at every turn. Rather than being able to be proud of who he is and what his abilities are, I have defended his “disability.” I HATE that word…. He isn’t disabled. He just experiences life differently. He sees EVERYTHING! He feels things deeper than I could ever dream. He forms words with his hands and it’s beautiful. I have allowed him to be exactly who he is. No tech. All hands. And I am SO proud of him!
That’s all for now. I’ll be back soon to discuss our recent hospital trip and explain why interpreters are so important and advocating for your kids is a necessity!
I’ll CleanCookSleepRepeat…. or CleanCleanOrderTakeoutCleanNapRepeat….. Life with a 3 month old and a 6 year old…….. zzzZZZZzzzzzZZZZZzzzzzzz… wha? Oh… Bye!!!