You Mean There's More Like Me? Who Knew???

We all want to feel a part of something, like we're "normal" or at least not complete aliens.  While we all love to be individuals, I think we also often try hard to "blend in" or feel like there are other people like us.  I think that's what being human is.  I remember in junior high just praying that no one would find one single thing about me that was different because a day of blending in meant a day of flying under the bully radar.  In high school, I started to come into my own a little bit and was more comfortable in my skin.  Instead of trying to blend in with everyone, I tried to find people who shared similar interests as me and become friends with them.  I guess that's where the concept of school clubs comes into play.  

Not much has changed I guess because I still find myself wanting to find other people "like me".  They don't have to have a large family or cute curly brown hair or freckles or always see the world through rose colored glasses. They don't have to share my faith or my love of the color blue.  They don't even have to be the kind of people who get all swoony when they watch shows like Glee or The Bachelor or go to a Blake Shelton concert.  The people I'm looking for to be "like me" are other hearing parents who are working their rears off to make the right choices for their Deaf/hard of hearing children.  With technology and the ability to detect hearing loss so much earlier, it seems to be a growing club.  The trick is finding the parents who are willing to speak out about it, to share their joys and woes, their triumphs, and their steps back.

When I started this blog the day we learned about Liam's hearing loss, I thought it was to help other people in my shoes. I thought I would be some sort of "inspiration" and source of hope to them.  I'd already walked the path with CJ, so I thought I might have some good insights to offer.  I also thought only maybe one or two people would read it because, really, who cares about what some strange woman behind a computer screen has to say??

What I didn't realize at the time was that my blog would bring people who are like me to me.  Every time I'd get a new follower, I'd click on them to learn whatever I could about them from their info. page.  If they had a blog, I'd find it and add it to my read list.  Eventually I started getting the occasional comment here and there. If it wasn't someone I knew, I'd do the same thing I do with my followers list.  Slowly, gradually, little by little, I noticed something.  The people posting here or following here are like me.  There are more people like me than I knew.  I'm not some island somewhere with thousands of ships floating by.  I'm one of many. 

I think one of the greatest points in which I realized this was a few months ago at the Walk For Hearing in our area.  Another mom came up to me and asked, "Do you blog?"  I said yes and she proudly said, "I follow your blog".  For just a minute, I felt like I was not only the only one like me, but I might even be some sort of celebrity among people like me. Don't worry. It didn't go to my head.  I quickly came back to earth and realized that the only people I'm really a celebrity to are my kids, and they are pretty sure I'm usually a celebrity failure. Recently that same mom who came up to me has been feeling attacked for her choice to implant her child as well as give her ASL.  Here she is. She and her sweet husband are parents just like Byron and me just trying to do what's best for her child in a world where there is no "right" answer for children like her daughter.  They make a decision, one that was anything but easy. They follow their hearts.  They share their experiences.  They get attacked for it for one reason or another by people who have never met them nor their child nor truly walked in their shoes.  And, once again, those parents are left feeling alone like there are no others like them.  Interestingly, though, more and more parents are stepping up and sharing who they are and that they, too, have felt alone on their path and is if no one out there was "like them" and that they are just looking for others with whom they could share.

Allow my to introduce myself.  My name is Aimee.  If you are a parent of a child with special needs, especially a special need that doesn't necessarily have any right answer, I'm like you.  If you have children with hearing loss and have taught them sign language despite oralists insisting it was the wrong choice, I'm like you.  If you have implanted your hearing impaired child despite the Deaf community begging you not to because it will ruin your child and break his spirit, I'm like you.  If you have held your child tightly and cried because you feel at a loss for how to reach them and make the right choices for them, I'm like you. If you've mourned the loss of your child's hearing, I'm like you.  If you have ever found yourself angry and frustrated and heartbroken and hopeful and ready to take on the world all at the same time, I'm like you.  If you've ever sat through your child's IFSP or IEP meeting and cried because you're just sure there's more that can be done, but you don't know what it is, I'm like you.  If you sat in that same IFSP or IEP meeting and felt more full of pride at hearing your child's accomplishment than ever before, I'm like you.  If you've ever rejoiced because your child uttered a word, any word, I'm like you.  If you have ever lost sleep at night just wondering what more you can do and questioning every single choice you've ever made on behalf of your child, I'm like you.  I'm like you.  I'm like you, and I'm not afraid to stand with you.  

In the end, it makes no difference which path we choose for our children.  The specific choices we make for our kids  may be the only thing about us that is really all the different anyway.  In so many ways, we are alike.  Short, tall, hearing, Deaf, sighted, blind, autistic, "typical"...none of that matters. We are all human.  And in that sense, we are all like each other.  And we need each other.  

Sometimes the Right Choice is the Hardest One to Make

Having a child like Liam who has the needs that he has sometimes leaves me questioning my Mommy instincts. I know I'm a good mom for him, but I don't always know what is the best choice in certain circumstances. This week has been a long and trying week, and my instincts have been tested to the extreme. I am proud to say that I think I did all the right things.

For the past week (almost two weeks as I write this), Liam has had a little cold with a yucky cough. I've had a hard time trying to keep his sats up, particularly when he first woke up. I was already a little out of my comfort zone since we've switched pediatricians with the departure of our favorite Dr. M. I don't know Dr. K very well, but I do know that it's clear he's been doing his research on Liam's case. I'm grateful for that. During the week, we had seen Dr. K. about three times. He instructed me on how to deep suction Liam's nose when he's congested. He can't have decongestant meds, so that was really our only choice. When his nose is clear, he can breathe through his canula, which is really important. He also taught me how to do CPT for him to loosen all the mucus. I hated torturing Liam with the suction, but it was working to help keeps his sats up.

Wednesday when Liam woke up, nothing I did would keep his numbers high. He'd had a rough night Tuesday night waking up coughing until he vomited and then just collapsing asleep when his coughing fits were over. He was clearly exhausted from all the coughing. I knew something wasn't right and that I needed to get more help for him than what I could do at home. I called Dr. K's office, but 2:15 pm was the earliest Liam could be seen and I knew he was struggling. I also contacted our pulmonologist's office and consulted with the nurse. She suggested that Liam really needed help as soon as possible. I agreed, and we headed in the direction of the Children's ER. It's a little over an hour's drive, but would land him in the care of the best dr's for him. At least that's what I was told would happen.

I arrived just after noon, and went in. They saw that he had his O2 with him, so he went to the front of the line. The nurse checked his sats, and he was at 92%, which isn't quite high enough. She had us wait a little longer before taking him back because he needed to be in his own room away from other kids who could make him sicker. She explained that he had his own oxygen and other kids didn't so he could wait longer. Okay, but now he's waiting in a room full of really sick kids and not satting high enough. Whatever. I could see that the ER was packed and was willing to wait for him to have the private space.

Finally he got to his little ER room, they gave him one breathing treatment to bring up his sats and took his history. He was seeing a resident doctor, who I think might have just recently hit puberty, but was sure she knew all the right answers for Liam. This is the exact information I gave them:
-He has had a cough with his sats all over the place for the last week.
-The pediatrician has him taking breathing treatments every two hours with CPT about every four hours.
-His ear is draining huge amounts of green thick discharge. This is new and wasn't there the day before. He is Deaf, and his ears need to be protected.
-He is just recovering from C-Diff, and has missed the last two doses of the medicine for it because we've been so focused on the breathing issues. He needs the next dose asap because we're just now having normal poop after six weeks of not having that.
-His pulmonologist was going to call ahead to let you know he's here and what to do with him since his lung disease is rare and needs to be treated a little bit differently than others.

The response the "doctor" gave me was the following:
-Yep, his ear is draining. Interesting.
-We all have C-Diff in our intestines, and your pediatrician may have jumped the gun a little bit in giving you those meds.
-The pulmonologist wants him admitted, so he's on a list to get a bed.

After the dr. left, Liam was taken for a chest X-Ray and tested for a variety of viruses. I explained that Dr. K. had already done both of those things on Monday, and that all were clear. They wanted to check again anyway. Okay. Fine. Check again. When he returned from the X-Ray, he received one breathing treatment and 30 minutes of IV fluids. It was noted that, at that point, he was well hydrated, so I have no idea why the fluids. But, okay. I can just suck it up and deal with all of this until he gets to his own room where the pulmonologist can take charge of his care.

Liam went to sleep during the breathing treatment and stayed that way for a long time. In total, he slept about four and a half hours. During that time, his nurse informed me that he'd have to go to a "holding annex" to wait for a room. I picked up my sleeping baby, who didn't even bat an eye and slept through the whole move, and followed her to the annex. It was one big room full of children with confirmed illnesses all divided by little curtains. There was one sink in the room. It happened to be in Liam's little curtain area. Great. Now everyone is rinsing their puke buckets in my child's area.

I was starting to get really nervous about this situation because I know how easily Liam gets sick, and how much damage it does to him. I spoke with the nurse and explained the situation and that he really couldn't be with all these kids. Why take him from a private space to one full of very sick children??? She called in the same very young doctor we'd seen, and explained the situation. Since the doctor was there, I again mentioned the C-Diff issue and that he really really needed that med. "He has C-Diff? Well, he should be in isolation then". Great!! Whatever gets him isolated I am happy to go with. They STILL didn't get him the meds for his C-Diff, though, and it's a drug to be taken every six hours. By this point, he'd missed a good four doses and the clock was still ticking.

The very sweet nurse tried to get him into an isolation room, but none were available. No matter. I was told he'd be on the top of the list to get a bed when one came open. Okay. Fine. I will wait a little longer.

Strangely, all the kids around him got into rooms. Go figure. I was livid. One of them was sent to the pulmonology unit where Liam REALLY needed to be!!! I was hopping mad, and brought it to the new nurse's attention. (There had been a shift change during this whole time). She said, "You're right, but that child went to a two bed room." Okay, I get that, but then at least he was only sharing with ONE other child. Liam was in a space that was starting to fill up again with up to twelve other children. I was willing to take my chances.

By this point, I was just in tears and beside myself. I was questioning my decision to bring him, worrying sick about the C-Diff issues, and it felt like I wasn't even thinking straight anymore. The on-call pulmonologist came in to see him. We'd met him before during our long summer stay. He was kind, but doesn't know Liam's case. He wanted him to have inhaled steroids. Fine. Whatever. This guy always wants to give steroids.

I waited another couple of hours, still begging for him to get out of that situation. Nothing. Finally around ten, the charge nurse came in and said, " I think we have a plan for him until he gets a room." My response? "No. We're done here. We are going home. Please page the pulmonologist and tell him we're leaving. I don't want anything to do with the little resident. She is full of it, and won't listen to my concerns. We are leaving. Now. Please make arrangements."

I couldn't believe I'd just done it. I was so angry, though, and hurt that they'd acknowledged a need for my precious baby to get medical help, but then denied him what he needed. My head was spinning. I knew that, if anything happened to him that night, I'd live with a horrible guilt for life. But I also knew that staying any longer was like a death sentence in terms of what diseases he was picking up sitting there.

The nurse called the doctor and came back to ask me if they had gotten a chance to note his sats while he was sleeping. ARE YOU KIDDING ME?!?!?! The child slept for FOUR AND A HALF HOURS!!! How did you NOT know this?!? How did you not notice him so out of it that he slept through the entire transfer from ER bed to holding annex hell??? That was enough for me. I took him and left.

I sobbed all the way home. I was just beside myself with worry and anger and frustration and the whole thing. It was the worst feeling ever. I called Jo on my way home, and she talked to me the whole hour plus drive.

The next morning, we went directly to Dr. K's office. I told him the whole story through tears. He was so compassionate and understanding...and pretty sure I needed a nap. Really? The three restless hours of sleep I'd gotten wasn't enough? Hmmm...

I pointed out that, in the ELEVEN HOURS that I was there, Liam had received:
-One breathing treatment
-One 30 minute IV fluid treatment for nothing
-One inhalation of steroids through an aerochamber.

He validated my decision and said that, if Liam is ever in that much trouble again, I don't need an appointment. I can just bring him in. If he is there, he will see him and take care of him and not let him suffer anymore.

We checked his sats and listened to him. He was doing better. The problem? He'd begun throwing up that morning and wasn't wanting to eat. My worst fear was rearing its ugly head. C-Diff was coming back in full force. Dr. K and I decided to watch it during the day with the understanding that I could bring him back at any time if I had concerns about the C-Diff. He also gave me some drops for his ears, BOTH of which were now infected and oozing.

Liam played well, took a long nap, but still refused to eat. Then the diarrhea started. I took him back to Dr. K's office where we determined that he needed to be admitted for IV fluids. Gaaaah! I was so angry. This whole part could have been avoided if they would have just listened to me at Children's in the first place.

The irony? Liam's pulmo called me and asked why he wasn't at the hospital when she went to see him. I told her what happened, the whole story, and that I'd gone down there trusting that he would be taken care of and fully prepared to stay through the weekend if I had to. She told me she'd called ahead and told them the following instructions for Liam:
-Regular breathing treatments with CPT
-Listen to the mother. She knows what she is talking about and will only bring him if something is really wrong.
-Keep him away from other sick children.
-Admit him to his own room.

I think we have a plan now. When Liam is really struggling, Dr. K will see him and consult with our pulmo. Depending on what he needs, we will decide if he needs to be admitted here or at Children's. If it's Children's, he will be directly admitted to his own bed. I feel better about that.

So, now that you've read through this loooooooong post, you see why Mommy instincts are sometimes so hard to read. It seemed to be against all logic for me to take him from the hospital that could help him, but I did it anyway because my gut told me it was the best choice. I'm so glad I did. I am proud to report that he seems to be on the road to recovery...now if we can just get him to leave his oxygen on....

RDSPD, IFSP, and ECI Oh My!

Little Guy had his ECI intake evaluation and IFSP (Individual Family Service Plan) yesterday. I'd been gearing up for it for a while, and working on preparing myself for all the work that would lie ahead. I knew I had a lot going for me because I already knew the team that would be set up for him, with the exception of a new itinerant deaf ed. teacher. But, just the thought of all the hours and hours of work was weighing heavily on my mind.

Before they came, I started practicing what I knew I needed to say. I had to practice it because what I was going to say to them is entirely out of character for me. That said, I knew the fact was that I needed to say it.

Finally, the time came and they all showed up. Ms. Francis from the school district was there. She's been the Beast's Deaf education teacher since he was 11 months old. She won't be Little Guy's teacher, but the teacher assigned to him was out sick. I was okay with that. The familiarity of having Ms. Francis there was actually really helpful and relaxing. Snort's nutritionist had already done her evaluation, so she wasn't in attendance. Snort's occupational therapist was there. Pretty's speech therapist was there, too. Lastly, Jo was there. Jo is a really special person to our family. She was the Service Coordinator for the Beast starting from when he was about 11 weeks old. She oversees all of Pretty and Snort's services, and will be taking charge of everything for Little Guy, too. She is making other plans for her life and may not be with ECI for much longer. But, I really do believe God put her in our path at this time for a reason. I really needed it to be her who helps me find my wings and fly, and I think she'll do just that before leaving.

The evaluation began and there were papers and questions flying everywhere. Teresa (OT) assessed his motor skills. Right on target! (Not that you can be too horribly delayed when you're only five weeks old, but that's okay). Jan (speech) did her assessment, too. Again, right on target for five weeks old. Ms. Francis was the last to do her testing/questioning. All were pleased to announce that, for now, he's right on target.

After the assessments were done, it was time to move into the IFSP portion of the meeting. At this point, Jo turned to me and said, "What do you see as your family and Little Guy's needs from us?" I could feel myself sweating and my heart racing just a little bit. I was almost fighting off tears at what I was about to say. I looked her and every other person in the room straight in the eye and was brutally honest. "I need this to be as minimal as possible. I usually handle stress so well, but I'm not handling it so well right now. Between Little Guy's reflux and RSV, and Snort's horrible asthma attacks, and all the doctor appointments, and the Beast's hearing issues and behavior at school, and anything else you can think of, I'm spread too thin. And I'm going to snap if I haven't already. So, I need to keep his services to a minimum."

There! I'd said it. And I felt better for having said it. I know that none of that sounds like anything out of this world. But, those of you who really know me also know that I usually will just pile it all on whether I have time for it or not. I would normally set him up for OT services monthly, speech almost monthly, service coordination weekly, Deaf ed. weekly, and anything else that was suggested. So, for me, this was a huge thing to say. Jo gave me a knowing look, almost relieved. She knows me well, and I think she probably agreed that I was at some kind of breaking point.

So, we went from person to person and decided what level and frequency of services would be needed. Jan comes to see Pretty twice monthly. She promised me she'd observe Little Guy while she's here and let me know if he's falling behind. So, he will have one scheduled visit from her in the next six months. Teresa comes to see Snort once monthly. She also promised to observe Little Guy while she's here and offer tips to help him out and to let me know if he's falling behind. She also is scheduled to meet with Little Guy once in the next six months. Suzanne (Snort's nutritionist) sees Snort once monthly, too. I'm not sure we set up how frequently she'll see Little Guy, but it will be minimal as well. Jo sees Pretty once a month and she sees Snort once a month. So, we set her up to work with Little Guy once a month, too. She didn't have to promise to tell me if he's falling behind because I've worked with her before. I have a perfect knowledge of the fact that she always lovingly speaks up when one of her children needs something. Lastly, we discussed services from our itinerant Deaf ed. teacher. She will be coming once a week. Again, I was proud of myself because I said in no uncertain terms "I need her to come with information that will help us. I don't need to be taught what a hearing aid is, or what a cochlear implant is, or the difference between Deaf, deaf, and Hard of Hearing. I need her to help teach Snort and Pretty about Little Guy's first language (ASL will be his first language. Speech will come eventually, but communication needs to come as soon as possible). I need her to give me a sign language refresher course, too". Ms. Francis nodded in agreement, and that was it.

The last portion of the IFSP is the part where the service coordinator asks what the family needs in order to meet all the needs of the child in question. Jo, being the by-the-book SC that she is, asked this question. My answer was plain and simple: "I need things to feel normal. It doesn't need to be normal to the rest of the world's standards, but I need things to feel normal for our family". Jo knew just what I meant without saying another word. I have every ounce of faith that things will feel normal again soon.

I created this blog in an effort to share our experiences with other parents who are just starting the journey with their own children. Having been there and done that once before, I felt like I'd have a lot to offer in terms of experience and understanding. But, I'm realizing that I am often learning many things for the first time, too. I've always known that ECI services are all about meeting the needs of the child and the family and about empowering parents to be adovocates for their child. What I learned this week is that ECI is also about empowering me to advocate for myself. After all, I will be the greatest teacher my child ever learns from. If I allow myself to become overextended and somehow "broken", I won't be all that affective of a teacher, will I?