Our new mantra has become: "Now we know why..."
1. Our kid has been a great sleeper since birth, nothing wakes him up. Phone calls, doorbells, vacuum cleaners, thunderstorms, tornado sirens... now we know why. (And here we just thought we were really great at this parenting thing).
2. He only had two volumes, loud and louder... now we know why. (Much to our embarrassment while sitting in the middle of church).
3. He loves loud music with a good strong beat... now we know why.
4. He wouldn't open closed doors, even though he was tall enough and knew how, unless we were behind him instructing him to open the door, he wouldn't do it... now we know why. (Turns out most children won't open doors if they can't hear what's behind the door).
5. He never babbled (not like his sister does), he just screamed (see #2)... now we know why.
6. The few words he did start speaking were mainly made up of vowels, because that is what he could here (for example a dog barking wasn't "Ruff" it was "uuu, uuu")... now we know why
We have found humor in the situation as well. For example, I told my husband the other day that when our son is school age and the students ask him what is in his ear he can say that it is an earpiece for the government and he is actually a secret agent, and then pretend to get a secret message and run away. We've also realized that when he is a teenager he can take out his hearing aids and pretend that he can't hear us when we say something he doesn't like.
The days go on and things are getting better. Like any big change your in life, it just takes some adjusting to, but the fact is you do adjust. When I first started writing this little series of mine, I intended it to be a one-article story. However, as I started writing I found I had more to say than just "here's what happened." It has been very therapeutic for me and I thank all of you who have read it through and supported me with your comments. My intention in writing this was to let everyone know you are not alone out there. Raising children is hard and things don't go exactly as planned. For whatever reason we seem to convince ourselves that this time life will do as we tell it to, but the Lord kindly reminds us that He is in charge. In part 1 a reader shared a link for the following story, I will end my comments here, but for anyone who is interested please continue reading. It spoke to my heart, and I can't wait to see what Holland holds for me.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Thursday, November 11, 2010
Wednesday, November 10, 2010
Processing: Personal Experience Part 2
Then the emotions hit. According to the Kubler-Ross model I should be undergoing denial, anger, bargaining, depression, and acceptance. I seem to be making up my own stages as I handle my son and his hearing loss. I never went through denial or bargaining. The doctors showed me the results from four different tests and I can't argue with scientific proof. There is a small part of me that says "are you sure?" But the larger part of me wants to take action, it says "what do I need to do?"
Instead I go through anger, blame, guilt, frustration, and acceptance.
Anger - I'm angry with the doctors for not listening to me sooner. I was the one who initiated contact with an audiologist, no thanks to my pediatrician. I am angry with the health department and their not-accurate hearing test. Fluid on the ears?! HA!
Blame - this is the hardest one for me. I blame the doctor (see anger). I blame my husband, maybe he shouldn't have tickled our son so hard, thrown him up in the air, wrestled with him, the list goes on. As time goes on I blame him for working while I handle the doctors, insurance reps, babysitters, and therapy. It's a silly blame, but I often feel so alone in this. But mostly, I blame myself. Was there something I should have done differently? I had a rather perfect pregnancy, but maybe I should have drank more water, refrained from having that corn dog, been more careful about heating up my deli meat. Then there is the whole issue of the labor and delivery. Did his hearing loss occur after being in labor for 28 plus hours and pushing for two? Should we have opted for a c-section sooner? I can't bare to think about it. Or was it when my milk supply started to dry up and I didn't know it, not until he started losing weight? So many things go through my head. The geneticist reassures me that unless I was abusing drugs or alcohol or deathly ill during pregnancy, there was absolutely nothing I could have done differently.
Guilt - you would think the guilt would come from the blame, but this guilt hits me on my blindside. My son has only mild permanent hearing loss, as I start to talk to other families I realize their child's hearing loss is much more severe. They are going in for surgeries and wearing cochlear implants. I suddenly feel guilty for taking this so hard, for stressing out over the day-to-day maintenance of it all. It could be so much worse, who am I to complain?
Frustration - this one is much more complicated. It's the every day routine we are now in. It's the struggle to keep a two year old from pulling out his hearing aids, of searching the store for size 13 batteries, of cleaning and maintaining the hearing aids. It's the hours I now spend in the car as I take my husband to work, my daughter to the babysitter, my son to therapy, home from therapy, pick up our daughter, pick up my husband. How do I know when my son is being a two-year old and ignoring me or simply can not hear me? It's the application of the newest technique they've taught me at therapy, the phone call from his mother's day out when they can't get his hearing aids back in, the exhaustion of it all. It's the opinions I get from all sides of what I should or should not be doing. Sign language or no sign language? It's the realization that grandparents now seem to be afraid to take the kids for the weekend because the hearing aids intimidate them. But mostly, it's the frustration that both my son and I receive when communication fails. I can't understand him and he can't make himself understood.
Some days are rough. My husband comes home from work and takes over the bedtime routine. I curl up in bed, hiding from the stress that threatens to crush me. My husband comes in and holds me till it passes. He somehow transfers some of his strength to me. With a good night's rest, I will be as good as new to handle a new day.
Acceptance - it comes little by little as we fall into a routine. The hearing aids are staying on more often than not, his speech is progressing slowly, and we are making progress. I am learning as I go and have quickly learned to take it one day at a time. Line upon line, precept upon precept. I turn to the Lord in my thoughts and prayers more often. Our son will never remember a life without hearing aids and for him it will become second nature. I hope that one day soon it will become second nature for me as well.
Instead I go through anger, blame, guilt, frustration, and acceptance.
Anger - I'm angry with the doctors for not listening to me sooner. I was the one who initiated contact with an audiologist, no thanks to my pediatrician. I am angry with the health department and their not-accurate hearing test. Fluid on the ears?! HA!
Blame - this is the hardest one for me. I blame the doctor (see anger). I blame my husband, maybe he shouldn't have tickled our son so hard, thrown him up in the air, wrestled with him, the list goes on. As time goes on I blame him for working while I handle the doctors, insurance reps, babysitters, and therapy. It's a silly blame, but I often feel so alone in this. But mostly, I blame myself. Was there something I should have done differently? I had a rather perfect pregnancy, but maybe I should have drank more water, refrained from having that corn dog, been more careful about heating up my deli meat. Then there is the whole issue of the labor and delivery. Did his hearing loss occur after being in labor for 28 plus hours and pushing for two? Should we have opted for a c-section sooner? I can't bare to think about it. Or was it when my milk supply started to dry up and I didn't know it, not until he started losing weight? So many things go through my head. The geneticist reassures me that unless I was abusing drugs or alcohol or deathly ill during pregnancy, there was absolutely nothing I could have done differently.
Guilt - you would think the guilt would come from the blame, but this guilt hits me on my blindside. My son has only mild permanent hearing loss, as I start to talk to other families I realize their child's hearing loss is much more severe. They are going in for surgeries and wearing cochlear implants. I suddenly feel guilty for taking this so hard, for stressing out over the day-to-day maintenance of it all. It could be so much worse, who am I to complain?
Frustration - this one is much more complicated. It's the every day routine we are now in. It's the struggle to keep a two year old from pulling out his hearing aids, of searching the store for size 13 batteries, of cleaning and maintaining the hearing aids. It's the hours I now spend in the car as I take my husband to work, my daughter to the babysitter, my son to therapy, home from therapy, pick up our daughter, pick up my husband. How do I know when my son is being a two-year old and ignoring me or simply can not hear me? It's the application of the newest technique they've taught me at therapy, the phone call from his mother's day out when they can't get his hearing aids back in, the exhaustion of it all. It's the opinions I get from all sides of what I should or should not be doing. Sign language or no sign language? It's the realization that grandparents now seem to be afraid to take the kids for the weekend because the hearing aids intimidate them. But mostly, it's the frustration that both my son and I receive when communication fails. I can't understand him and he can't make himself understood.
Some days are rough. My husband comes home from work and takes over the bedtime routine. I curl up in bed, hiding from the stress that threatens to crush me. My husband comes in and holds me till it passes. He somehow transfers some of his strength to me. With a good night's rest, I will be as good as new to handle a new day.
Acceptance - it comes little by little as we fall into a routine. The hearing aids are staying on more often than not, his speech is progressing slowly, and we are making progress. I am learning as I go and have quickly learned to take it one day at a time. Line upon line, precept upon precept. I turn to the Lord in my thoughts and prayers more often. Our son will never remember a life without hearing aids and for him it will become second nature. I hope that one day soon it will become second nature for me as well.
Tuesday, November 9, 2010
Whirlwind: Personal Experience Part 1
"Your son has mild permanent hearing loss." The words bounce around in my head.
"Oh, okay," I say. "What does that mean?"
"Well, we want to run a few more tests to confirm our findings, but it will mean hearing aids and auditory and verbal therapy."
"Oh, okay." My daughter lurches forward and fusses, I hand her a toy to distract her. The audiologist peers at me closely, concern in her eyes. She is under the impression that I am taking this all rather well. I smile and nod as the audiologist and speech pathologist explain the steps we need to take from here, show me a chart of what my son can and can not hear. The information is thrown at me quicker than I can absorb.
It's not until I am strapping the kids into their car seats that my heart starts to drop. My son has hearing loss? HEARING LOSS! It was the last thing I expected to hear. Sure he had never passed his newborn hearing screening and is behind in his speech, but by golly, the doctors kept telling me it was just because of fluid in the ear. Take care of the fluid, take care of the problem. I was expecting at most that he would need tubes in his ears.
I call my husband at work. "How did it go?" he asks.
"Good, he was such a trooper, they did four different tests on him, plus some more stuff. Umm, can I pick you up for lunch?" I can't explain it over the phone.
"Sure..." he sounds hesitant. I am worried he has something going on, I can't go the whole afternoon without talking to him, my husband, my help meet. "No," he reassures me, "I can go to lunch."
He gets into the car and I start in on the explanation I've been reciting in my head for the 25 minute car ride to his workplace. "He will need hearing aids and therapy," I recite.
"Are you serious?" my husband asks.
Then come the phone calls, my side of the family, his side of the family. I spend all afternoon on the phone, explaining, answering questions I barely know the answer to myself. My mom's response is, "Are you serious?" Do I sound like I'm joking? By the end of the day I'm emotionally exhausted. We are going out for dinner that night.
Within weeks, the hearing aids are fitted, therapy is scheduled. There will be two different sessions, a one-on-one therapy and a class therapy. The important thing is to prepare him for school. Both sessions will be held weekly. Insurance does not cover hearing aids or anything hearing related. They will only cover the therapy if it is listed as a specific type of speech therapy. I will need to find a babysitter for our daughter twice a week. The audiologist instructs us on how to fit, clean, and take care of the hearing aids. The batteries must be replaced weekly. There is special cleaning solution and dry crystals and a container that the hearing aids must be kept in nightly. We will need to do a genetic test to make sure the hearing loss is not a sign of something bigger.
I suddenly feel very overwhelmed.
I've been in contact with the state's early intervention program. They will subsidize the therapy and hearing aid costs until he's three, when we will be turned over to the school districts. He will be reevaluated when he turns three.
It's been a few months later and I am still processing everything. An interpreter for the deaf asks me if I have reached the acceptance stage yet. I tell her I don't know. I've been told that we will go through the same stages of grief as one who has lost a family member to death. Denial, Anger, Bargaining, Depression, Acceptance.
I'm not sure where I'm at in those stages, I'm just acting. I'm just taking it one day at a time, trying to do what's best for my child, and all the while worrying that it won't be enough.
"Oh, okay," I say. "What does that mean?"
"Well, we want to run a few more tests to confirm our findings, but it will mean hearing aids and auditory and verbal therapy."
"Oh, okay." My daughter lurches forward and fusses, I hand her a toy to distract her. The audiologist peers at me closely, concern in her eyes. She is under the impression that I am taking this all rather well. I smile and nod as the audiologist and speech pathologist explain the steps we need to take from here, show me a chart of what my son can and can not hear. The information is thrown at me quicker than I can absorb.
It's not until I am strapping the kids into their car seats that my heart starts to drop. My son has hearing loss? HEARING LOSS! It was the last thing I expected to hear. Sure he had never passed his newborn hearing screening and is behind in his speech, but by golly, the doctors kept telling me it was just because of fluid in the ear. Take care of the fluid, take care of the problem. I was expecting at most that he would need tubes in his ears.
I call my husband at work. "How did it go?" he asks.
"Good, he was such a trooper, they did four different tests on him, plus some more stuff. Umm, can I pick you up for lunch?" I can't explain it over the phone.
"Sure..." he sounds hesitant. I am worried he has something going on, I can't go the whole afternoon without talking to him, my husband, my help meet. "No," he reassures me, "I can go to lunch."
He gets into the car and I start in on the explanation I've been reciting in my head for the 25 minute car ride to his workplace. "He will need hearing aids and therapy," I recite.
"Are you serious?" my husband asks.
Then come the phone calls, my side of the family, his side of the family. I spend all afternoon on the phone, explaining, answering questions I barely know the answer to myself. My mom's response is, "Are you serious?" Do I sound like I'm joking? By the end of the day I'm emotionally exhausted. We are going out for dinner that night.
Within weeks, the hearing aids are fitted, therapy is scheduled. There will be two different sessions, a one-on-one therapy and a class therapy. The important thing is to prepare him for school. Both sessions will be held weekly. Insurance does not cover hearing aids or anything hearing related. They will only cover the therapy if it is listed as a specific type of speech therapy. I will need to find a babysitter for our daughter twice a week. The audiologist instructs us on how to fit, clean, and take care of the hearing aids. The batteries must be replaced weekly. There is special cleaning solution and dry crystals and a container that the hearing aids must be kept in nightly. We will need to do a genetic test to make sure the hearing loss is not a sign of something bigger.
I suddenly feel very overwhelmed.
I've been in contact with the state's early intervention program. They will subsidize the therapy and hearing aid costs until he's three, when we will be turned over to the school districts. He will be reevaluated when he turns three.
It's been a few months later and I am still processing everything. An interpreter for the deaf asks me if I have reached the acceptance stage yet. I tell her I don't know. I've been told that we will go through the same stages of grief as one who has lost a family member to death. Denial, Anger, Bargaining, Depression, Acceptance.
I'm not sure where I'm at in those stages, I'm just acting. I'm just taking it one day at a time, trying to do what's best for my child, and all the while worrying that it won't be enough.
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