Hovering

On an impromptu stop at a Wal Mart, my mother decided to get G's hair cut. He needed a cut desperately and she was being the good grandmother and getting that little chore out of the way while they were out shopping.

Well, "the girl" my mother called her, sat G down and mother explained to her that once he removes his CIs that he'll hear nothing. Mother proceeded to explain how he wanted his hair trimmed up and assured "the girl" that she'd stand close by in case she needed her to communicate for her while he was off air.

Hmm, "the girl" got really nervous and told my mother she'd have to go sit down and not hover over her while she cut hair....(hover over her?) Yep. As you can imagine, that didn't go over well with G's grandmother. Mom said, "I'm not sitting down until I'm certain you know how he wants his hair cut!"

Needless to say, he got a slight trim and we'll just see that he gets to his regular barber (who is much more understanding and nicer) than some people tend to be. Completely made the Gman uncomfortable as well as mom but they both learned something from their impromptu stop.

Thank You

As we begin to fill out our thank you cards, I realize I didn't buy enough. There is no way for me to personally thank everyone because there were so many people who donated money, food, their voices, and prayers for the event last weekend. There were people in the crowd I never got to see, or hug, and filling out these cards seems like such a small thing to do. Our community has pitched in and raise over $5,000.00 towards Brook's new ears. She said the other day, as I tried everything to just turn one of them on, "I want ears that match. I want some that are all the same color and not pieces put together!" We have submitted her paper work to SunMed Medical and now we wait. They say the whole process will take 8 to 10 weeks but we are very excited, and nervous, and trying to be patient.

Study Day

 Back at the first of the year, as my Dermatologist removed the cancerous tumor on my foot, we discussed my children. She was very interested in the oldest child's Goldenhar Syndrome. She had heard of it, but never seen a person who had been diagnosed to her recollection...so she asked us to participate in a large event held there each November where Dermatology Doctors come from far and wide to learn more...

My mom and I loaded the boy up at 5 am this morning and headed south, to UAB's Kirkland Clinic. They provided us with breakfast, coffee, cookies, other snacks, and more coffee. The boy earned a nice monetary prize from the University for his time and that is probably the only reason he wanted to go (typical). They placed us in a room (other patients were there also) and I kid you not...over a hundred doctors from all over the world came in small groups where I gave my "speech" on cochlear implants, Goldenhar Syndrome, skin tags, scars, dermoids of the eye, etc etc etc...

Gage did grow tired of the whole event after the first hour (we had already seen like 80 people at that point) but he was polite as expected and they all thanked him/us for coming and helping out over and over again.

I had explained to him before we ever went that this would help some child in the future. If they come across another child with these features, conditions, anomalies, they may have some idea what direction to point the parents...and that is all we wanted to do. They also reiterated that him as well so he was happy to help.

Both of the kids did well on their report cards this time, and we continue to mainstream as we always have. They are both participating in the church Christmas play again this year and we are about to leave for practice now. We still hope to upgrade Brooklyn's "ears" by April of next year as we must come up with the funds, since insurance will only cover 80%, we'll need over 3 grand before we upgrade to the N6s. Fingers crossed and praying now, we hope to accomplish this for her. She is on her last few spare parts right now! Until next time....

Interpreting

Last week, my child finally cleaned her room that actually passed inspection. This earned her a sleep-over! I allowed her to invite one friend over for the night. This little girl was in her classroom last year and they had become very good friends. This was the first person (aside from a cousin) who actually has slept over at our house. I've not let my children sleep over away from family yet (I'll get there one day). As you might have guessed, she is a child of average hearing. Brooklyn had been to her swimming party the week prior to this so I decided to back off a little when the two went swimming at my house. I told myself to skip the interpreting if possible to see how the hearing child would communicate with the deaf child and vise versa since my little girl removes her hearing devices during swimming or showering.

They did great! It didn't take the hearing child very long until she was gesturing, pointing, and flapping her arms just like we do. They had a ball and actually had two full days of each other before we reluctantly gave the child back to her family. Hopefully it was a great incentive for Brook to keep her room clean! So far so good. And yes, those are waterproof ear plugs in her ears...she was actually recovering from an ear infection.

Torn Apart

We are having a major issue here in Alabama with hearing impaired children and AVT services. In the past, Early Intervention (birth-three for those who have the potential to fall 25% below peers w/out disabilities or those with actual diagnosed disabilities-for the correct definition, click here) In the past, an EI coordinator had worked in the building of our local HEAR Center where many happy children and happy parents receive services for audiology and AVT (auditory verbal therapy). This is part of Children's Hospital and a preferred clinic for many parents and in the past EI has been very supportive of their services.

To give you an idea of how they work, a child is usually diagnosed with the hospital, seen by the ENTs who specialize in hearing loss in children, get proper advice from the professionals as to their many options from sign language, cued speech, Auditory Verbal therapy vs. Speech Therapy, etc. and other options such as hearing devices like Baha, Cochlear Implants from various companies, hearing aids, and other options. For those seeking the cochlear implant route, they usually require families who are eligible to use an AVT in their office who can not only provide the proper therapy, but help the in-house Audiologists getting proper MAPping for their implants or proper adjustments for hearing aids, etc. I've personally been there when one of my children were in therapy, the AVT determined they needed to boost a certain sound for them, and all we had to do is walk across the hall, take five minutes and get that adjustment, and then go back and finish therapy. I personally found this vital for the first year or so after my kids received their hearing devices.

The AVTs are in a clinic setting, but parents go back with the child and are trained how to continue therapy outside the clinic doors, with pretend play from everything from swimming, grocery shopping, bedtime routines, almost anything you can think of using the children, parents, therapists and pretend kitchens, dolls, toys and games of just about any subject you can imagine without having to actually take you through a store, or sit through a bed time routine or going shopping with the family...very similar to the way some EI Speech Pathologist would do inside the doors of a home however not all are not trained in the Auditory approach, they are simply Pathologists. Most therapists would use the pretend play to teach the children and parents no matter what room they are actually located in. The only difference is that in the clinic, they are certified in AVT whereas most used in EI are not. My opinion is the few that have some knowledge of the AV approach can't possibly take on the additional work load for these kids for weekly therapy.

As of late, EI has determined to pull AVT from select families and justify it by saying that using the HEAR Center clinic, is not a natural environment. I just have a problem with that IF THE PARENTS who are the team leaders prefer this setting. Afterall, aren't we, as parents the child's natural environment? Aren't we attending and learning from the therapists? Aren't we doing "homework" and returning week after week with progress? Even though my family graduated therapy years ago, my heart goes out to these families who use EI and the HEAR Center and now are faced with services being pulled. The HEAR Center itself are co-creators of the group PEEPs (Parents Educating and Encouraging Parents) a state-wide parent mentoring group which I also helped develop. They are really dedicated to these kids first and foremost and knowing that EI pulling kids away from this clinic because they can't offer in-home visits is absurd to me. I feel like it is EI who needs to read the clause in IDEA Part-C which states that some kids can't get the best results from therapy in a natural environment so if the TEAM decides that it is proper to visit a clinic, so be it. At least that's the way I understood it. I also feel like removing services without the full team (especially team leaders) is also non-compliant.

Parents are also finding out that their insurances will only cover a portion of the visits that are also in limited number and come to find out EI has been billing their insurance all this time and now they are down to half a year left with very few visits left that insurance will cover. So in my opinion, EI needs to use the Federal Funds they were given to cover these visits and not bill their insurance since many of them are going to be stuck using this vital insurance and paying out of pocket to continue their certified Auditory Verbal Therapy where they CHOOSE to have it.

The good news, is that parents know this isn't right. They are fighting, they have ADAP on their side, and are already making great progress in this EI debacle. I also feel like this is a great opportunity for these families to look at the Alabama School for Hearing. My hope is that this will be an opportunity for this great school to grow. I would be great for this preschool to be able to expand and help kids younger than preschool age should these services be removed from the clinic as EI wants. That would take lots of money they don't have so I don't see that as an option right now. I'm not sure how this will all work out for them, the families, but it breaks my heart that I have bragged on how lucky we were to have deaf children in Alabama and have such wonderful coordination from all groups and services, and now see how that is falling apart.

And in case anyone from EI or the HEAR center reads this, I am basing all my info from parents....unhappy parents...not from professional opinions. I see desperation in parents who have kids that were flourishing and it's scary to know that removing services, or even reducing or compromising them in anyway, will have a negative affect on the kids. Hoping to get this all resolved soon and wishing those families the best. Always lean toward trusted professionals who keep your CHILD(REN)'s best interest at heart. These are my opinions and I do imagine if EI had proper AVTs in place that COULD go into ALL of these homes WEEKLY as many children need, I may feel differently but they do not. And I also want to stress how important that first year is of MAPping and how easy it was for us having it all there in one office. I do want to say that there are some really really great professionals inside all of these services and clinics. I do not blame the therapists at all. They have tremendous work loads and doing what they can to help and most of them have the kids best interest at heart....my concern is those not working directly with the kids....to be continued, I'm sure.

Good Luck,
Val (PEEPs)

The Wrong Thing

Due to the fact that I've received multiple private messages on Facebook about this one single blog post from my other blog...(click here)...I've decided to cross post it here and tell a quick little story that I was reminded of, when a friend read that post.

For my family, it has never been wrong for other children to ask questions. I have always taught my kids that when other kids ask them "what's wrong with their ears" or something similar, the best thing to do is answer them. If they don't feel comfortable doing that, they can come get me and I'll do it for them but I prefer my kids answer questions themselves...this builds confidence and they need to use the voice that The Lord gave them...I am just their back-up plan.

Here is The Wrong Thing to do...

On several occasions (when my kids were tiny), I've watched small children stare at my children's ears. Sometimes the pure fascination in their eyes would bring a smile to my face. My small child would stare back with no answers to give yet and only a few clear words that nothing to do with cochlear implants. Just as I am about to give the child the answers he/she deserves, Mom comes over...looks at my child and in a gasp, shew her kid away. We were never even given a chance. I wanted to tell the child, the mother that my children's ears didn't work, at all, but God decided that He had some things for them to hear, so we were given devices that make their ears hear sometimes...

But instead, an embarrassed mother that had no answers and apparently would kill over if her kid asked a question, ran away from a really great family. She'll never know how funny my kids are. She'll never know what a gift we were given. She'll never know that it's okay to ask honest questions. Some of our biggest Blessings have come from brave people who have stood in line with us, talked to us until we hated to say goodbye, laughed with us, learned with us, discovered with us...and made it okay for us. Our confidence was given by those brave people who didn't run away. My heart has sank low lots of times in the beginning, when my kids were smaller. But I have to say in hindsight that the confidence also came from those who ran...and I guess I should thank them as well...because I knew that soon, I wouldn't let anyone run. I'd politely tell them that it's okay, it's fine and I'd show them that special needs kids are approachable...which is exactly what happened.

So if you're still stuck in that rut, of letting people stare, not answering questions you know they have...if you don't speak up, your kids never will either. Most of the time, my oldest (who isn't shy) will answer all the questions himself. Sister is a little shy but that doesn't mean we can't take questions. Once people know they are listening and talking to a deaf person, amazement sets in. I have to explain to most hearing people that these devices don't magically make their little brains understand what sounds are...it takes an incredible amount of therapy...an incredible amount of family dedication, an incredible amount of hard work from the child and everyone around the child, but it's all worth it.

This is an old video for those who have never seen my kids without their "ears"



Sometimes the captioned version doesn't work well but here it is on youtube also--he was trying to let her FEEL him talk--she's not a very good speech reader--unlike him.

Giving Up

Years ago, I was blessed with a unique child. A child that cried no tears, a child that heard no song, a child that smiled at everyone but insisted on seeing the bottoms of their shoes so he knew what type of tread they were standing on. As an older child, he explained he could tell a lot about a person by the tread of their shoes. He compared it to tires. I guess he knew who walked off the road and took the different paths and climbed the mountains by the bottom of their shoes.

I won't say it's been easy for the Cochlear Kids, always. I know many say we make it look that way when they watch our videos, or meet us at the park, but it wasn't always. I had a child that medically, never was the perfect cochlear implant candidate to begin with. Just when giving up was within our grasps, a doctor looked at my child who had refused to learn any of the signs I tried to teach him, a child that was more social at age three than I had grown to be as an adult and he told me "I'll pray about it."

As he took the next three months to pray, I did the same. My child entered a very long and complicated surgery that our doctor was capable of performing and I knew that when my child came back to me, it would be the beginning of something big and fantastic, whether he could hear or not. Relief in knowing we had our final answer was something we looked forward to.

Now he's grown into a handsome (almost) eleven year old. He's learning all about Jesus and Faith and things we can feel but not physically see. Things that I was told years ago, would be very hard to teach a deaf child. He's learning that prayer can be the answer for a lot of things...for everything. It shouldn't be a last resort, I know that now, but if wasn't for prayer, there would be no Cochlear Kids.

~check out The Road~

I didn't hear the teacher

So yesterday, B's teacher tells me a story about something that happened in class where Brook misunderstood her. She felt horrible about the ordeal and she almost cried telling me about it but I assured her, I'd get with B and see if I can find out why she's not hearing her. She then reminded me that B's FM was out for repair. That's what it is.

When Brook got in the car she said, "Mama, I cried a little bit today. Mrs. J told me I could take a test on the computer...I thought she said in 3 minutes, but she said 30, so when I got up in 3 minutes I got in trouble. I started to cry a little bit and I told her that I couldn't hear her. Then she told me it was ok and it was fine to go ahead and take the test." I told Brooklyn that her FM should be back very soon and I know her teacher was reminded she can't hear well. Sometimes we all forget. I am just as guilty.

We work so hard to get our kids caught up that often they fit in too well. The fact that they are still deaf children gets masked by such typical performances in the classroom. No matter how well they are performing, deaf children often work much harder at listening than other kids do. That "work" becomes typical for the deaf kids and no one really knows how much "work" they are putting into just listening and trying to keep up with conversations. With any special needs, these kids might look around more often. What you might think is cheating, they are simply looking at the other kids to make sure they themselves are doing what they are supposed to be doing. What you might think is excessive talking, may actually be the kid trying to verify with a peer that they heard the instruction correctly.

I am very fortunate that Brook isn't scared of the teachers (I don't think she's scared of anyone! lol) and will self advocate when necessary. Sometimes she lets things slide with her peers that I wish she would address more but as she grows, matures, and learns that people aren't going to hate her for needing repeats, etc. I think she'll get more comfortable. I am very fortunate that my kids have such a caring group of teachers. Yes they are treated much like any other child. They forgive my kids when they make mistakes (and let's be honest, this is daily with these two! lol) and we in return forgive them when they make them. One thing is for sure, in some form or fashion, we keep them all on their toes.

Bullet Updates

Just a few quickies from the Blakelys. We have been swamped with gatherings, fun stuff, church stuff, school trips, and who knows what else. I'm subbing less now and back at the accounting office part-time during tax season as I do often to help them out so they don't get behind during their busiest time of the year.

• Went on field trip with Brook's class. We had ordered reserved seating front and center but upon arrival, the teacher asked for our "special seats" and they were taken. Her teacher in the most fabulous advocating fashion got us our seats...because we needed them and she had pre-requested them way in advance! Thank you and the theater was more than happy to accommodate. Love it.
• B's FM system has a low static sound over the teacher's mic. I will address this at our next audiologist visit which is soon. Both kids will be MAPped over the Christmas-break holidays...whew, that will be a long day!
• Kids are doing well in school, socially and academically as far as I can tell. They have friends, they are treated well, and as equals, they have great teachers. We get two weeks off soon and are looking forward to it.
• I can't believe my baby is about to be EIGHT years old...for real! Although we've already celebrated it, she will turn eight the day after Christmas.
• She did well in the church Christmas play. She read her line perfectly and sang right along with the other children. Never would have guessed that eight years ago!!!

I still cringe

I know I've strayed away from "advocacy" for quite a while. I feel comfortable with my kids getting what they need at school. However, I still cringe when adults say to me "Oh, she could hear me!!"

Brook had mic issues the other day. According to her, the sub turned the mic on when it needed to be off and off when it needed to be on. They apparently had issues with Brook's behavior and I hate that. Brook immediately told me as she got in the car this day all of her troubles. Unfortunately, when no one listens to Brook, Brook gets very angry, and sometimes even disrespectful. She got in the car with ATTITUDE pouring from her. She vented, and I assured her, the teacher didn't hate her. I was gonna address it but when I'm met with the words "Oh she heard me!!" I simply brush it off as, why even try?

It's not always VOLUME she needs, it's clarity and people just don't understand. Plus the mic will buzz when it's out of range and on unnecessarily at times so I can see Brook's side. I however, haven't written down the steps for the mic to be left for sub teachers, and believe me, I know how subbing can be. You are lucky to have a clear moment to figure out anything much less technology.

I am only aggravated at myself because I've reached the point where we are too comfortable, and it's affecting my kids. I must put back on my advocacy hat at some point and go back to educating the public. Maybe I should just do a presentation somewhere, lol- like the old days. I shouldn't have ever got that comfortable--no, I won't be receiving Mom of the Year!! Darn.

Stolen

That's right, stolen. Apparently someone really needed a Caution Hearing Impaired Children sign, along with a stop sign as well. I still have one sign up that is apparently less accessible to thieves but our stop sign down the road is gone as well...

Now that my kids are older, I feel safe without the signs, they are terrified of the road anyway and know they may not hear a car coming so they don't get too close to it. But to steal a sign like that, really?

The Checkout Line

So Gage and I are in the checkout line, just minding our own business when an older gentleman in front of us is discussing the 'end of the world' that was supposed to occur yesterday. I'm placing my items on the belt of the counter when he says to me "I'm trying to figure out what's on his head!!"

Now, a few years ago, I might have been offended. However, he wasn't trying to be rude, he wanted to know! I smiled and said, "They are kinda like hearing aids, but more powerful. They are cochlear implants. He's deaf."

The man kindly returned a smile and asked what his name was. When Gage piped up and said, "My name is Gage" the man whirled his head around at me in shock. "He talks so good! I was married to a deaf lady for years and she never did learn to speak very well. I bought her all kinds of hearing aids and nothing seemed to help."

We chatted for about a minute before we both parted and went our separate ways. He was from Texas, he asked about the recent tornadoes and possible damage we may have had, and he learned about cochlear implants...

After careful consideration...

We have chosen the education plan that we feel will best suit my daughter. We are fully aware that this may change in the future and at that point we will re-evaluate our situation and make decisions based on her needs (as always).

We were very torn between moving forward with the public school she's unhappy at or switching her to the state Deaf School. We talked to many people...including Brooklyn. We have reached a decision (thank goodness).

Brooklyn's problems seem to be social. Yes a few issues can be pointed to her deafness, but most of all, it's her reactions and interactions with the other kids. Honestly, the kids don't care that she wears implants. It's just part of her. However, if Brook is upset because she doesn't always understand people the first time, removing her and placing her in a school FULL of signing children, would only enhance her frustrations. She is interested in sign. We will get her some Signing Times videos. It's not as if she's missing part of herself by not signing. It appears to be a fun 'hobby' and if she wants to learn an additional language, that's awesome at this point.

We have decided she needs to be more social outside of school. I thought I was doing everyone a favor by skipping b'day parties, skipping church, skipping sports because of my fear she would not behave properly. So, I've taken a loooong look at our behavior-which can seem anti-social to the kids, since we work, and go home. We have decided to enroll her as a cheerleader this year, if she don't change her mind. And we are getting more involved with our community. She and I already had an awesome time volunteering to make first aid bags for storm relief workers last week. There were tons of kids there and she did great! She got a sweet note from a little girl in her class that told her how much she loved her and combined with a strong effort on her part as well....she had an awesome week at school. She had confidence, she felt better, she wanted to go...

And how could I remove her from a place that has taught her this...



I mean-this is FIRST GRADE. She is doing awesome and we are proud to say that we have decided to keep her where she is at. She will learn new coping skills, work on her interaction with others and I do believe she will have a great Second Grade year at her public school. We thank you all for your comments, emails and phone calls that have helped us realize-we could do her more harm than good by removing her from her current school. ((hugs))

We've Reached A Decision

Woohoo! I finally slept last night. As you know the torment of my child's future-education wise-has really been tearing me up inside. Well we have finally reached a decision. I'm waiting to announce which direction we are going til later because I need to time to caption a video and I just don't have time this morning. But at least I can sleep-at least she can sleep-and we all feel comfortable moving forward with education plan that we hope will fit her best. I just wanted you all to know what a key role you have played in our decision. We have spoken to everyone about this (that matters) and we have received A LOT of advice. We have come up with a solution. And I do believe will work best for her. And THAT IS WHAT MATTERS.

So which will it be? Deaf School or Public School?

Torn

Oh my-I have no idea what to do...

I've not slept very well in days, I've almost run out of tears, I am exhausted.

I have a miserable child when it comes to school.

Part of me thinks like this: we are down to our last few days of school, we'll have summer break, and she'll start the new year off on a different note.

The other part says, let her go to the Deaf School. I've always said that Alabama was one of the best places to be if your child has a hearing loss. But when it comes to school, that's not the case. My children academically do fantastic in public school. Gage does great socially. Brook doesn't. She's to the point now where she's miserable. It breaks my heart when she tells me she has only one friend. It breaks my heart to see the other kids scoot away from her at the lunch table. It breaks my heart for her to say, "When I ask the kids to repeat themselves, they throw their hands up and say 'NEVERMIND!!'" She never really started off on the right foot. She's always defensive, even unnecessarily at times and the kids think she's mean. She can be such a sweet little girl. She's very loving, and plays and has fun at home. She does great in her own classroom for the most part. Lunchtime and PE seem to give her misery which is the social part of the day.

She has begged me to send her to a different school, the Deaf school. I am so torn. Gage doesn't want to change. I hate to split the kids up. She would be an hour and a half away while he'd be 10 minutes down the road.

I am so thankful that Alabama now has Alabama School for the Hearing which is taught by AVTs (Auditory Verbal Therapists) I think all she needs is to be around the other kids w/hearing loss. However, it's just growing out of infancy stage and trying to anchor down into becoming a permanent solution for kids with hearing loss. However, that's still an hour and a half away, with no buses running up here and they are more of a preschool, not elementary. If this school were already established, already equipped for elementary, we'd be there in a heartbeat, even if I had to make that drive everyday. Unfortunately, our only option is going to be AIDB (Alabama Institute for the Deaf and Blind) which focuses on both oral and ASL. Brook likes the idea of sign so I have no problem exposing her to that. This is the main stopping point for Gage, he has absolutely no interest.

He is however attending a camp there this summer so we'll see if he changes his mind. I kinda feel like we are heading in that direction...but maybe not just yet. If I could get both kids leaning in the same direction, I'd be a happy camper. So unfortunately, I may need to split them, if we absolutely can't agree. Gage would be fine where he is at, but he can't hear worth a flip these days. He's by no means where he was a few years ago before all of his revisions. I honestly don't think it's a bad idea for him to try the school out just to see, we are never sure if he'll even get to keep his implants. He's only had a few headaches in the last few days so we'll continue to monitor that.

I just need to find a place for my sweet girl.....a place where she'll feel happy and accepted. She would love the class sizes which are about 5 to 1...we'd have to get up very early, ride for 40 minutes to catch a bus which will travel another 40 minutes to the school...which would turn a 7 1/2 hr day into a 10 hr day...that's a lot. And then again, she will do a good deal of maturing over the summer and return to school a second grader. Gage had a really tough time in K and 1st grade too. He blossomed in second and has been happy ever since...I kinda would like for her to attend the camp next year (if she can stand to be away from me for a whole week) and see how she feels then...at the ripe old age of 8.

It bothers him...

Before school yesterday, my little man said to me, "Mama, there's an older kid at school making fun of my ears and it's makin' me and H [his best friend] MAD!!" Now, luckily my small little child has HUGE friends. Not huge as in way too big, but in fourth grade, these boys are growing! So I can only imagine how big the older kid is who is teasing Gage about his little (adorable) ears.

I got fighting mad calmly asked him the usual questions to make sure he wasn't taking a common comment or question and getting upset about it. No, he wasn't. It was teasing, and sternly told my child, "You don't put up with that! You don't have to!" I told him if the kid didn't stop after they've let him know it's not OKAY...to slip by the counselor's office or let his teacher know because they all look out for Gage. His buddies look out for him. Some of the biggest boys in his class have always, since Kindergarten, looked out for him. I remember going into his K and 1st grade class and talking to all the kids about Gage, his surgeries, his ears, his deafness, his cochlear implants, and they have always been very interested, very understanding, yet treat him as their equal. They spend the night at our home, I am their substitute teacher from time to time, I know their parents, I love the kids in fourth grade!!

Back to the story...yes, I got a little heated, who wouldn't when you find out your smart, adorable, loving, kind to others child is being picked on at school. I sent the teacher and counselor an email. I even talked face to face with counselor who took it to the Principal and let's just say they are heated as well. Our next mission is to find out the boy's name since Gage don't know it. We are working on that. Meantime, I tell my child, "...and I'll tell you something else, if any of those older kids knew that you could make a remote controlled toy vehicle from scratch by yourself, they'd be jealous! You don't even need ears with a brain like that! And as a matter of fact, you are THE toughest kid I know. I don't know any other kid that is as brave as you are, walking into the hospital time after time after time, without complaint, for all your surgeries...you don't have to be big to be tough!!" After I realized my face was red and I was borderline ghetto and shaking my head, waving hands everywhere, I stepped back, calmed down..."You know, usually when people make fun of other people, it's because they need something. He likely needs attention, maybe he don't have any real friends, maybe no one plays with him at school, maybe his Mom and Dad talk like that, maybe people make fun of him a lot, but it's not your place to give him what he thinks he needs. You are not to be on the receiving end of his jokes. You don't think it's funny, your friends don't think it's funny. It's not funny, and it'll stop one way or another."
The End for now...as a parent, you can only hope and pray that something you say will help.

Inventing the Cochlear Implant

Thank you Kelli for not noticing I've stolen this from your facebook!

Here's an interesting read. The inventor of the cochlear implant received an award recently. You'll find it in COSMOS here where you'll read about his first cochlear implant, it's super interesting!

Not much happening here, I'm still going to The Gym and look forward to a strobe light Zumba workout on Sunday! I've been incredibly busy between writing in my spare time and subbing a lot at the school, I have little time for much else. All will slow down soon when my little buddy will have his 5th ci operation, (6th incision, he did get a 2 for 1 last time!). We look forward to the PEEPs in the Park next weekend.

We are having an IEP for Gage Oct 1. He can't hear his Reading teacher who is a great teacher, just soft spoken, mic only helps so much w/his one ear so it is suggested to do pull outs, I disagree. He's failing, but either needs a teacher he can hear or needs captioning. We'll see how that goes. I'd be happy w/switching him temporarily to a teacher he can hear, and after he's all settled after his surgery, if he's caught up, hearing well, I'll consider moving him right back where he's supposed to be. I also think his ADHD meds aren't doing their job but I'll make that decision after his hearing is 'settled'.

Have a great weekend. Brook is doing good, she goes for mapping soon too. It's amazing to me that she can go so many months hearing well w/out needing mapping. She's on a 6 month map (I think) but she'll be one of the lucky ones in the future that gets to go yearly I think. She's doing well in school, a little behavior issues but nothing like last year! Whew!



Wall of Inspiration

Gage's name is 5th one down in blue, click on photo to enlarge it.

We received this framed photo w/a pic of the new hospital behind it.

They got toy 'hard hats' and binoculars and best of all, cupcakes!

I was really touched to be in the same room w/all these amazing kids. I'm even more touched to find out Gage was nominated when I thought his frequent flier miles at the hospital entered him into some kinda random pick, but no...someone thought of him as an inspiration (teary). We got to see our friend Adele who has cochlear implants too as well, her name was up on that wall (and well deserved, she kicked the old feeding tube habit this year and running all over the place!!!)

A few years ago, my phone rang, and on the other end was a desperate mother of a disabled child, she didn't know what to do, where to turn. I assured her, though she didn't believe me at the time, she COULD do it. I gave her the name of an organization that would help her, and I told her God gave her that little boy because He believed in her. That little boy wasn't supposed to make it through his first year but he did. He made it six and a half years before he went back HOME. I had heard of his passing recently and desperately searched for on Facebook but I couldn't remember her married name so it was hopeless. Yesterday, in a crowded hospital lobby, I saw her beautiful face. I asked my mom if it were really her and she said it sure did look like her. When I finally made my way to her, she thanked me for helping her years ago. We talked about our kids, and about the difficult healing process she and her family will continue to work through. I assured her they will find their new normal. She said she's waiting on God to show her what He needs her to do, she wants to give back in some way to the hospital, somehow. In tears as I type, she has no idea that she's an inspiration. Her bravery, her strong belief and her strength is something I completely admire. Her baby's name is up there for a reason, my baby's name is up there for a reason.

No one hopes their child will spend night after in a hospital bed, hooked up to IVs, begging for the pain to go away, waiting on an organ to be donated, treatment after treatment, test after test...

but Children's Hospital makes those long nights which can sometimes turn into days or weeks for some kids, much more pleasant. All of Gage's memories of staying there are full of Santa Claus, Harley Davidson motorcycles, toys, crafts, and free cookies! This is why so many want to give back, even when their children are called Home. Sometimes all it takes is an encouraging smile or a hot cup of coffee, both can be found at Children's, believe me I know. My child is a Child of Children's.

Read more at my Examiner site.

Water park anxiety

It does get better as my kids age...I'm talking about my water park anxiety. All parents have a certain amount of fear I guess taking more than one kid to a large crowded water park, and likely they fear drowning or separation. However, when your kids can't hear even simple instruction from lifeguards like when to slide down, or even a whistle blowing in their ear when they exit off incorrectly, you have added concerns for safety. Here is last year's story. And no we do not water proof our ci's yet, Brook's are out of warranty so if anything happens....we can't afford the risk. But some people do it all the time. And my kids prefer to leave them in the car and use them only when we get our lunch cooler and eat, then back in the glove box (otter boxes) they go.

A lot of pre-planning went into our adventure. I reminded the kids to be sure and tell the lifeguards at the top of the slides that they can't hear and please use a thumbs up or other hand signal when it is okay to go down (I had to wait at the bottom to catch them).

I guess my only two issues was the parking area and one lifeguard who doesn't have a clue.  I was a little uneasy with so many people and cars in and out of a grassy parking area. I had to run and knock them with a water noodle gently tap the kids to remind them to walk with ME before they got ran over because they were not even paying attention. And most of the lifeguards were fabulous and used hand gestures and I noticed they continued using them after my kids left their area, I guess just in case! **grin** Except for one (tsk tsk)...I saw her using her whistle to communicate as to when people should slide down AND when people stepped off incorrectly so as my child sat up top, awaiting her cue, I quickly said, "Now that little girl is deaf, you'll need to motion for her to come down instead." She looked at me as if I were speaking Russian and said, "Ok" and then she blew her whistle and Brook sat there...**smile** So I did what any good mother would do and I stepped in front of this lifeguard and held my hand up and motioned for my child to come down...didn't have any more problems!

Again this year we ran into school friends and took cousin Kendall along for B to play with. They had a ball!! Everyone got along for the 6 hours we were there, or I would have never even stayed that long. And Kendall and the other kids are more than happy to help out if needed, as far as relaying messages and communicating unheard instructions. One of the little boys Gage was playing with has a Deaf grandmother so he's really used to it and did a great job looking at Gage when speaking! I noticed. Had a great time and since everyone did so well, I may just buy passes next year and go more often! Almost anxiety free!

4th Fun...

Put on your heels and BAKE! I was told, "Mama, please let me do it all, I'm smart enough....I've been a baker before!" She did a fabulous job. We are all set for the fourth of July! Smoke bombs have already been spotted in my yard. I asked the lady at the fireworks stand for whistlers and she said they didn't send her any! Second year in a row they've not had them. I explained why we prefer the ones that whistle over regular bottle rockets. Brook was with me, aiding in spreading our cochlear implant awareness!  "My kids are hearing impaired and they can follow the whistling sound better than just a pop." She asked if those were cochlear implants B had on and I'm always tickled when someone knows what they are called. And this lady had just the thing! Although they weren't the old school whistlers, they did whistle as they went up, PERFECT! Can't wait to use them tonight. Have a safe 4th!