Thursday, March 31, 2011

I Love Reporting Leaps and Bounds Progress!!

Liam's light bulb is officially turning on!!! His school had a two week spring break during which he went just a couple of times for just an hour of one-on-one at a time. This week he's back in school, and I can't tell you how pleased we are with him. In the past two weeks, Liam has learned:
*Too many new words to count
*How to put a peg puzzle together
*How to put wooden beads on a string using the Melissa and Doug shish kabob set
*How to SAY AND SIGN block.
*How to follow instructions and line blocks up to form a "train".
*To attempt to color inside the lines
*How to correctly hold a crayon
*To attempt to duplicate shapes on a paper on his own. It's still a scribble really, but he almost has the circle down.

He has a few other new tricks, too. These are slightly less desirable, but I guess we get the good with the bad. Less than stellar tricks he's learned are:
*How to open the dishwasher
*How to climb into the dishwasher
*How to pull every item out of the dishwasher and break my favorite plates
*How to say and sign uh oh when he breaks something
*How to take items that are of value to his siblings (Drezden's glasses right off his face!!) and run with them to make the person chase him while he laughs maniacally.
*How to dump entire drawers full of silverware all over the kitchen.
*How to flood the bathroom.

So there you have it. Leaps and bounds progress has really been made. Now if we could just rein him in a little and tame his wild side we'd have a perfect angel on our hands.

Tuesday, March 22, 2011

CJ's Hearing Test Update...and a New Surprise!

I realize CJ had his hearing appointment on Friday and I haven't had a chance to update since then. Suffice it to say I'm glad Spring Break is D.O.N.E.

I'm pleased to report that his hearing appointment went VERY well. It appears that the internal part of his device is working just fine, so that's really great. He did need to have his volume turned waaaaaaay up. When we were done with the appointment, the aud. asked him how he liked the changes and he said "I'm delighted! When can I get a processor for my other ear?" I'll take that as a really great sign that things are better. The hearing aid ear is so/so. I don't think that there's a big change in that ear since we last had it tested, but I think he's really starting to discover what the implant can do for him and preferring it. We are still really on the fence about whether or not it's best to implant the other ear. I know what he wants. I just don't know if it's also what we want for him.

One thing we're working on with him is teaching him when to set his processor for the FM and when to turn it off so he can get better quality when he's not using the FM. He is a little bit confused about how and when to do that, so we'll keep working with him. Sara has done an AMAZING job of teaching him to say "I'm sorry. I didn't hear you. Can you please repeat that?". He's really great about that during conversation, so that's a great start. I'm working with him on saying "Can you please check to see if my FM is working? I can't hear you." He mentioned that he thinks sometimes his music and PE teachers don't use it, though he did say Mrs. Lackey is good about remembering it. Since she's his key teacher, that's probably most important. I think we do need to work with her just a little to help remember to check his processor to see if he's set for the FM or not. The way he talks about it, that really does help him with the background noise.

Anyway, that's the updates for now. I'm excited to report that they're good updates. In other news, (here's the surprise referred to in the title) Rachel had her hearing tested today with Betsy and Valerie, and they did find a bit of a conductive hearing loss in the lower frequencies. Her audiogram looks a bit like Liam and CJ's, but with measurably better hearing than them. She can clearly hear those higher frequencies better than the lower. They checked thoroughly and found nothing to indicate an ear infection or blockage of any kind. When they did the bone hearing test (I know that's not the right term for it), she did great. We have an appointment for her with the ENT in a few weeks. We'll be watching to see what needs to be done next. We've already contacted Sara to let her know what is going on, and will speak with the school district tomorrow to decide how to proceed.

She was tested at birth, given an ABR as a baby, and then tested again at around 2 1/2 years old. There was no indication at that point that anything was wrong. Does that indicate that she might be like the boys with a progressive loss? It would definitely explain why she talks so loudly. I always just figured it was because she's a SuperMom kid and in this house you have to be loud if you want anyone to hear anything you say. Even the cat is loud here. I think the plan right now is to follow her hearing closely, consult with the ENT, and work on qualifying her for speech with the school district. She's always qualified for speech even as a 2 year old, but I opted not to pursue it here because I figured she could catch up in Kindergarten. Way to go, Mom. I'll be collecting my Mother of the Year Award soon.

Okay, so there you go. I'm sure that's all far more information than you all ever wanted.

Monday, March 21, 2011

By Popular Demand-A Repost

I actually posted this entry back in October of 2009. In the past two weeks, I've gotten three separate e-mails from people telling me that they often refer back to it when they're feeling down. I had no idea!!! I also find myself coming back to it frequently when I start to feel down, and I love it. I don't know that I can really claim the thoughts behind it because I really feel like it came to me as inspiration from a higher power. In any case, I'm posting it again in hopes that someone else can glean something from it.

Why ME? Why Not?

With the current poor economy and the outbreak of so many illnesses and the increase in autism and whatever else one can think of, I've noticed a new sort of disease. Why Me Syndrome. I have some thoughts on this that are mine and mine alone. I'm going to share them and you're welcome to read on with the understanding that I'm in no way trying to be unsympathetic to the plight of those who suffer. On the contrary, my thoughts and prayers are continually with those who weep, suffer, and are heavy burdened.

I think it needs to be put out there that no person is ever going to be exempt from pain and suffering at some point in life. Why, then, do we often find people crying "why me?" when bad things happen? Sometimes I feel like the only answer I can give is "Why not you? What have you done to exempt you from ever having undesirable things happen to you?"

Let me explain myself. It's my firm belief that muscle can only be built through hard work and endurance. The same goes for emotional and spiritual muscle. If we don't have opportunities to endure, we don't have the chance to build our emotional and spiritual muscle. While times of trial and tribulation can often seem like a dark tunnel with no light in sight while we're in the midst of them, it's undeniable that we come out stronger because of them. We may not see it right away, or maybe not ever in this life, but the painful hardships we endure today are providing the framework for the stronger, more capable people we have the potential to become tomorrow.

I get asked the same question all the time. It's not always phrased the same way, but the jist is the same. "How do you do it, Aimee? How do you handle five very young children, three of whom have special needs? Do you ever wonder why you are the one with these children and these difficulties?" I'll tell you how.

It's very simple really. I was taught from a very young age that the trials we face in this life are God's way of complimenting us. We are told that God won't ever give us more than we can handle with His help. If He honestly believes that I can handle all that He's given me, He must think very highly of me. And that is a compliment.

Another thing that leaves me feeling okay about mothering these particular children is greed. Plain and simple. I'm greedy. I know beyond a shadow of a doubt that enduring to the end will result in guaranteed blessings, and I will do anything to earn more. I know that these blessings come because I've experienced it first hand. I won't go into the details, but suffice it to say that my family and I have had far more goodness in our lives than we've had hardships. It's not even always so much in a spiritual sense. Sometimes it's just plain and simple happiness. Before we had children with special needs, we were unable to see the amazing details of day to day life. We didn't realize how amazing it is to see your child walk for the first time, or to hear him utter his first real word. We took good general health for granted. The task of breathing in and out while still keeping our hearts pumping was mundane and never thought of. Now, I relish the time I spend just watching Little Guy breathe in and out and in and out. And I'm happy for those things.

I think there are many people who live by the misguided notion that living a life that is good and faithful to whatever religion they embrace should exempt them from pain. The truth is that there is really no "vaccine" for hardship. No one can prevent it from spreading to themselves. Living a good and faithful life is simply one way to find the tools to face pain head-on when it comes. When we live by the principles of some gospel and have a belief in some sort of God, we give our lives a sense of purpose and meaning. We give ourselves an outlet through which we can seek out peace and comfort. All of these things can ease the pains we suffer, though they can't prevent them from coming in the first place.

Setting aside the spiritual aspects of it all, I have to ask why NOT me? Were I to sit down and cry and pout and beg someone to explain why me, I would hope someone would point out that I am no different than any other person on this planet. I don't come with some special ticket that allows me to go directly to the front of the happiness line. Last I checked, there was no "get out of jail" card for pain and suffering. Why and how could I for one minute think to myself "why me?".

If not me, then who? Who would I see fit to suffer my pains and frustrations and disappointments? What makes me so much better than anyone else that I should think I don't "deserve" this to happen to me? Really, who does deserve to suffer? Is there one person more deserving of afflictions like cancer than another? Does one set of parents "deserve" a perfectly healthy baby more than another set of parents? Does one baby deserve to come into the world and become part of a healthy well-functioning family more than another baby? Were we really able to decide who to give pain to, how would we decide that? How, as a society, would we decide why one person over another?

I'm not going to lie. It's not easy. I've had frustrations time and time again. I've had times where it just seemed like one bad situation after another was piling on me. There have been times that I've felt that I just needed to sit down and cry, and that's precisely what I've done. Just cry. I get tired, so very tired sometimes. Sometimes I want to run and hide because I feel woefully inadequate for the responsibilities placed before me. On occasion, I have to acknowledge that it hurts to know that so many people look at my children with pity. Who wants perfect strangers to feel sorry for their children? No, it's not easy. It never has been.

To those who ask me how I do it, I want to say that I really can't imagine not doing it. Mothering these children is what I was born to do. They are my purpose. I don't know that I had the tools to provide all that they needed from day one, but I know I've worked hard to gain those tools, and in so doing I've become a better person. Facing my hardships head on has made me a stronger person in so many aspects of my life. I've looked the fear of failure in the eye and beaten it. I'm by no means the perfect mom. I never will be. But I, with all of my shortcomings, am the perfect mom for them. That I know for sure.

I don't know that my ramblings have made any sense in terms of the Why Me Syndrome I see so often. My point is simple, though. When we sit down and cry, why me, we miss out on seeing the opportunities for growth right in front of us. Whether it be growth for our caregivers in our times of physical weakness, or our own opportunities to gain knowledge, or simply the opportunity to come to really appreciate life for all it is, the opportunities are there.

My plate is full. All our plates are really overflowing with stress, worry, pain, frustration, and whatever else is weighing on us. I can't ask why me because I honestly can't think of one reason why NOT me.

Tuesday, March 15, 2011

Pity? Really???

I'm not a huge fan of the show "Celebrity Apprentice" with Donald Trump, but I have been tuning in to watch this season because I really love Marlee Matlin. I love that Deafness is a part of her, but it doesn't define her. She's a great role model for Deaf children.

Anyway, I was watching this week's episode during which the teams were tasked with writing a children's book and performing it. This seems easy enough, right? While her team was brainstorming, Marlee suggested that it would be great to have a character in the book who had a hearing loss. The reaction of her peers was shocking to me.

It was decided, mostly by Dionne Warwick, that having a Deaf character would lead to "pity" and sadness on the part of the children reading the book. As a team, the majority decided that the four and five year olds were too young to be told that someone has a hearing loss and would feel sad about it, and instead went with another storyline that completely bypassed the Deaf idea all together.

Pity???? Really??? The last thing I think of when I see CJ and Liam is pity. I think of silliness, sign language, big messes, lots of giggles, ice cream parties, , hearing aid batteries, cochlear implant testing, etc. I think of a LOT of things, but pity and sadness are not on that list.

In case there be any question out there, allow me to clarify a few things in The Gospel According to Aimee. Children are NEVER too young to be taught anything. Even the youngest child can be given bits and pieces of concepts and come to accept it. To suggest that three and four year olds are incapable of understanding that a peer has hearing loss is ludicrous! CJ was four years old once. He stayed that way for a whole year, too. And, in that year, HE HAD PEER FRIENDS!!

The other children didn't fully understand what Deafness entails, but they knew they like CJ. They knew his ears "were broken, so he wears hearing aids and talks with his hands" sometimes. They knew he liked to collect rocks and organize them by size and color. They knew that he loved to tell knock-knock jokes, even though he didn't really understand why the jokes were funny. They knew he loved a good whoopee cushion and would laugh at every fart and bathroom joke. They knew he LOVED books and often hid them in his backpack so he could read them later. What they didn't know was pity for him. Never once did I see any of his peers feel sad or sorry because they knew CJ and that his ears don't work right.

Kindergarten went fine for CJ as well as first grade. He has his challenges and sometimes has to work harder to really play like the other kids because he misses some of what they say, but that doesn't get him down. On the contrary, I would assert that other children are better off for having been around CJ, Liam, or really any other child with a disability. Learning to coexist and enjoy peers with differing abilities as young children is what breeds acceptance and understanding. To suggest anything otherwise is narrow-minded.

If I feel pity for anyone, it's for those who are unable to see the beauty of diversity right in front of their own noses. I feel pity for the people who suffer with ignorance so badly that they are unable to see the amazing joy that Deaf children have within them. I pity the individual who clearly has not had the pleasure of meeting my boys and embracing them for who they are.

Let me be perfectly clear. It's absolutely acceptable to feel empathy and cry for the parent who is mourning the loss of a child's ability in one way or another. It's normal to feel frustration when trying desperately to communicate with a child who is unable to tell you why he's crying. It's human nature to have questions about how hearing aids, cochlear implants, sign language, and hearing testing works. To feel pity for a Deaf child, however, is just wasted energy. For anyone who was wondering, my children need your love and acceptance. They don't need your pity. At all.

Friday, March 11, 2011

Well, It's Safe to Say Chocolate Is NOT One of His Oral Aversions



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We've been making steady progress with Liam's eating, and I'm pleased to report that he has an array of new foods he's willing to tolerate. Chocolate is not one of those foods. It's not that he won't tolerate it. It's just that tolerate may not be the word we're looking for here.

I'm thinking "falls madly in love with" is a more accurate description of how he feels about chocolate. The other night for Family Home Evening, we planted little seeds in cups to watch them grow (They've already sprouted, by the way!). For our snack that night, we made little dirt cakes. Each person got to dump their pudding in the cup, mush up an oreo, throw in a few gummy words, add some flower sprinkles, and enjoy their treat. As you can see here, chocolate pudding and Liam got along very well. I'm still cleaning it out of his ears.

More On CJ's Cochlear Implant

As you may recall, I posted a week or so ago about the fact that there is some possibility that his internal device is failing him.  It could be that I'm in denial, but I'm somehow not overly concerned.  Yet.  I am admittedly scratching my head trying to determine how he can possibly be functioning so well, and have only two electrodes correctly working for him.  Could it be simply that he a true genius?  Probably. That's usually the best explanation.

There are certainly some questions that need to be answered.  Only time and testing can answer a lot of them.  I have some frustrations with the fact that his hearing aid ear is still not being attended to because his audiologist is so concerned about the implant. While I understand that the implant is most important, I also think the aid should be set to perfection if we really do believe the implant is no longer serving him correctly.  The audiologist at Liam's school is MUCH more equipped and readily available to do the testing and make things better for him, but he has to be a student or an alumni there to be able to take advantage of those audiology services.  We may have found a loophole to make that happen, and I'll respond to that shortly.

If he is NOT having failure issues with his implant, why are we starting to see changes in his hearing capacity across the board?  What could be happening to change what was once working so well for him?  After attending a one hour workshop with the director of Liam's school, I implemented some of her ideas and started running some little at-home tests of my own. Because of that, I was able to send an e-mail to his whole team and get the ball rolling with open communication between the Dallas team, the new team, and Liam's school.  It's so pivotal in my opinion that every one of the players involved in a child's education have open and free communication with one another.  Sometimes something as simple as an e-mail sent to everyone can be all it takes to get that happening.  Once the communication starts working and team members compare notes, it's easier to decide what to do next.

I've copied and pasted the e-mail into this post.  The people involved are Kristi (CJ's teacher from TX), Betsy (director at Liam's school), Sara (CJ's current teacher of the Deaf), and Linda (CJ's former AVT).  Here is the context of each e-mail:

After all the other kids were in bed, I went in and "played a game with just him and me".  With him in bed less than five feet away from me, I turned my back to him so he couldn't read any body language or lips at all. He did have his DSi on very low, so that would be the only noise to speak of.  I asked him to repeat some words for me with just his processor, and then just his aid on. The results were lower with the processor, but surprisingly not by much at all.  Here's what I noticed:

1. When I had him repeat a string of NUMBERS after me, he got them right every single time without fail. 
2. When I had him repeat unrelated mono-syllabic words after me, he got less than 30% correct. We're talking words like dog, bed, cow, sit, frog, shoe, house, car, etc. All were very simple words that I know for sure he uses as part of his daily vocabulary.
    This leads me to believe that he got the numbers right because he was using the context clues (knowing it had to be a number) with whatever parts of the word he heard. When he was given totally unrelated material, he really could not get it.  He never did get one full set of three correct using words.

When I talked to Katie, the aud. at Dr. Clary's office, she said that her experience was that the NRT test is only incorrect about 3% of the time and that she does feel about 97% sure that we need to explant and then re-implant.  Until I played with him tonight, I was a little bit iffy on how accurate that would be.  What we don't know is how long this has been going on.

Kristy-Did you ever run any kind of testing like this on him when you had him, and if so, did you notice anything similar to this?  I actually expected better responses at least with the hearing aid than I got.

Sara-Have you run anything similar to this, and what results did you get?

Betsy-The rest of the questions are for everyone, but especially for you.  Given all this information, I am most curious as to where you would go with this information.  The Dallas team doesn't seem to put much stock in the NRT test.  The St. Louis team feels that the NRT should be heavily considered. The one thing both teams completely agree on is that the integrity test is the deciding factor, and that's where we're going from there.  

The Dallas team does say that the only NRT they did was at implantation and at that time, they found 6 working electrodes, but weren't worried at that point because apparently it's common to get lower results at the initial test. If he really was only getting 6 electrodes to begin with, does this point to him possibly not being a great candidate for implantation like with thought he was?  I feel like he's done GREAT with whatever he does have, so I'm inclined to be willing to try it again for him.

What should we expect in terms of auditory training if we do have to start over for him?  If he's only ever had 6 electrodes, it would seem to me that it's going to be very overwhelming to suddenly have them all working. I do recall very clearly that everyone was always shocked at how much he could be turned up without ever a complaint. Could it be that he never complained because they weren't really working to begin with?  Just how far back do you feel that this would put us?  Sara feels like she would be able to implement the needed auditory training, and I completely trust that she could. She's not let us down yet. I'm just wondering if you would do the same, which is to keep him mainstreamed and just intensify the pull-out time for training.  If you wouldn't do that, what would you do for him?

I think that's it for now. The integrity test hasn't been scheduled yet, but Katie is working on getting the first possible appointment for him.  Really, until that's done, I don't know that there's much else we can do. I'm not worrying until I am sure there's reason...although playing with CJ tonight definitely raised a few red flags.

Thanks, ladies!!  You are all amazing!!!


Reply from Kristi:

Just the facts. I'm trying really hard not to get emotional here (it's not really working, though).

We talked about this a little bit at the time but there was just SO much going on in your life and all I really had was just a "feeling" so I felt a bit silly and didn't push it.

I noticed around the end of Jan. into Feb. (the semester before you moved) that I didn't think CJ was hearing very well. No big deal, I thought. Everybody was sniffly and stuffy, CJ included, around that time. So, I thought maybe his hearing-aid ear might just be stuffy or full of fluid.

However, I never saw any improvement. So, yes I did sort of do some informal "testing" games with him. I can't give you specific percentages but we played with noise-makers of different pitches (somewhat like with Liam) and with my voice and with trying to find the location of sounds.

Here's what I noticed:

1. CJ was not hearing as well as I thought he did before.

2. He seemed to be relying on his hearing aid more than his processor.

3. Then there was a period of time when he didn't have his hearing aid and he seemed to have the most trouble during that time. This just confirmed to me that he was depending on his hearing aid much more than I would have thought.

4. He was relying heavily on visual cues, facial cues, and lip-reading. If he had his head down looking at his paper when I said something, I almost always had to repeat it when he looked up.

Things I noticed with his processor were that it didn't seem to matter to him whether it was on or off or if he was in the "wired" room or not. I don't mean that he didn't care if it was off his ear/head. He always wanted to be wearing it. I mean that it didn't seem to make any difference in his hearing/understanding.
As far as his hearing aid, he didn't seem as attached to it or overly-concerned that it wasn't working but he did seem more lost and was not hearing as well without it.

That last semester CJ just didn't seem his usual outgoing, curious self. He misunderstood more single words and asked "what?" more frequently. He seemed just a bit less confident, more tired, a little less excited about everything.

Keep in mind this was all during the time when things were very chaotic and confusing in his whole little world. All his things were packed in boxes, the house was in the middle of selling, you were gone some (to see the house and I think Liam was hospitalized then, too), he was staying with different people, AND he had been very traumatized by the tornado drill at school and was freaking out at every storm we had and we had alot of them that Spring. was kinda understandable that he wasn't really his usual charming self and appeared a bit more tired and not as "with it".

I just feel awful to think that maybe his processor wasn't really working that whole time!

As far as having more than six electrodes being overwhelming to him - I don't see that as a problem at all. Can't they control how much it's turned on and do it slowly so that he isn't overwhelmed? They turn it up/on as he can tolerate it. Is that right?

PLEASE let me know everyone else's input and keep me updated!

Love to all,

Reply from Sara:
I waited to respond to you until I got to work this morning and could give you percentages.  I worked on following directions with CJ using a visual lat Friday (3/4) and Monday (3/7).  On Friday he asked me to repeat 30% of the time.  He says, "I did not hear you.  Could you please repeat that again?"  On Monday, he asked me to repeat 50% of the time.  I will work with him tomorrow on following directions not using a visual and let you know how he does.
As Kristi said and as you and I have discussed, we are getting the answers to many of our questions.

From Linda:

You know his hearing better than you think his hearing had decreased significantly? It seems everyone thinks so. There are hard failures and soft failures. Unless I'm mistaken, hard failures are easy to's like the CI is broken and doesn't deliver sound. A soft failure allows a person to hear, but like they're hearing blurred, indistinct. I am NO expert on this, but that's what it appears. Has the Cochlear rep been called in to do an integrity test? That will be the real test.

Let me know what goes on and if you're going to possibly replace the CI there or here


Betsy opted to wait and meet with me today during Liam's parent ed. time, which was much easier.  Because of the open lines of communication, though, she was able to instruct Sara on some testing to do with CJ so we can begin to really gather quantitative information regarding where he is now versus where he was when we first moved here. Back in July, CJ went to Liam's school to have some placement and skills testing done, so that offers us some sort of baseline to work from.  I'm not sure it helps a ton because I think his troubles started early in 2010, but it's better than starting from scratch and working our way up.

As far as resolving our troubles with wanting him to have better audiology care, there may be a loop hole.  If he needs to be explanted and re-implanted, he will need intensive rehabilitation therapy.  In that case, it would be fairly easy to argue with the school district that spending the summer at Liam's school is better than just the standard summer school a lot of kids with hearing loss receive.  If the integrity test shows that his internal device is fine, then it is fair to reason that he is having trouble knowing how to use the hearing he does have. In that case, we can still try to say he should spend his summer at that school learning to use his hearing more affectively so that he will be prepared to learn using his hearing instead of learning through observation when he starts second grade.

Any way you slice and dice it, there are questions to be asked. I don't think we have many worries or fears yet. Just questions, and that's okay.  After all, if things were to be status quo all the time, I imagine I'd be just a little bored.

If I Didn't Know Better, I'd Say Liam's Light Bulb Has Come On

Wow! What great progress Mr. Liam is making!!! He is finally really interested in signing words, and I find him imitating almost every sign I demonstrate for him.  On top of that, he's vocalizing some sounds as well.  We can't ask for better progress.

One example happened just last night. I'd put him to bed, but could still hear him sitting in his bed talking to himself as he played with his toys.  I peeked through his door and waved to him as if to tell him goodnight.  He looked straight at me, blew me a kiss (which is totally new!) and said "buh buh" for bye-bye. Suffice it to say I slept well tonight.

Wednesday, as I was walking him into school, he saw one of his friend's mom.  He looked right at her and said "Hi!" just as clear as day.  I've NEVER heard him say that one, and he used it in an appropriate context!!  Go Liam Go!!

Last Friday as he was working with his way-too-cute-for-words teacher, Ms. Terry, she showed him some toy fish. He watched her as she picked up each fish and put it near her face and made it pretend to swim.  After she was done playing with him, she turned around to get another activity ready, and he picked up the fish, put them by his face, and pretended to do just what he did.

All of these are steps in the right direction!!  I'm so excited to see him trying to be an active player in family activities and finally getting something out of being at school.  Yesterday, he helped bake cookies from scratch with us and seemed to actually understand what he was doing.  He was of course most interested in getting his ten (Okay, closer to fifteen because I snuck him a few extras when the other kids weren't looking) chocolate chips.

Even today, as he sat at the table for lunch, I showed him the sign for cheese.  He signed it after me perfectly, so I then gave him a reminder prompt for "please".  The little genius looked me straight in the eye and signed "cheese please".  It's always such a delight working with him and seeing the progress he makes each day. I love that his Deafness makes these little babysit that much more spectacular for us.  Liam, you are truly a gift!

Sunday, March 6, 2011

The Great Thing About Parenting Children With Special Needs

Parenting kiddos who have special needs always has its ups and downs.  I think it goes without saying that we all, as parents of even the most "typical" children, have had our share of heartache and frustration. I don't want to talk about any of that today.  I want to talk about one of the really great parts of parenting my children.

It's the little things.  Because every single little thing doesn't always come easy to my kids, I get to really enjoy and relish in the things that we would probably otherwise take for granted.  Liam hasn't had to wear oxygen during the day in almost a year. A year!!  This is a kid who is supposed to be on continuous oxygen until he's at least three years old, and probably until he turns seven.  We still have to monitor him at night, but that's it.  CJ has such great speech that, in Texas, they'd kicked him out of all the speech classes available.  He wasn't supposed to really be able to speak clearly at all. Ever.  We won't even talk about his reading skills. He reads beautifully and is self-taught. When he was a baby, his teacher told us to be prepared for him to possibly not even read at a fourth grade level by the time he graduates high school.

So, today I want to update on the little things my children have given me in the past week to be grateful for.  To some, they'll seem small and simple. To me, they're perfect examples of my children moving mountains.

Aiden: (Soon to be 11 years old and considered "typical")  He has mastered the art of acting like a monkey for his school play.  It is safe to say there is no one who can take on the role of Aladdin's monkey and perform it with half the accuracy that he does.  That's got to count for something.

CJ: (7 years old, Deaf).  We just found out that there is a distinct possibility that his cochlear implant isn't working correctly, and yet he still functions in a mainstream classroom as if nothing major were going on.  AND, he is loving his time in his dance class with Rachel.  His teacher happens to be a friend of mine, who reports, that he is learning a variety of balance activities that he couldn't have dreamed of doing a few months ago. The skill he's most proud of?  He can finally do a roll-over.

Rachel: (4 years old, and considered "typical")  Rachel is finally learning to form some of the letters in her name.  She is VERY proud of this!

Drezden: (3 years old, has some global delays)  Drezden is finally starting to recognize some of his letters.  He can identify his name in writing and HE HAS GONE 3 DAYS WITH NO BINKY!!  He no longer cries for no reason, and his hitting has decreased significantly.  Instead, he has found his voice.  Today, he was able to tell me in a way that I understood "My cup is stuck and broken."  That was enough for me to figure out that the pulp in his orange juice had filled his sippy cup holes.

Liam: (2 years old, Deaf, suffers NEHI syndrome)  Liam can sign "milk", "fish", "more", "please", "banana", "shoe", and "eat".  He is trying to vocalize some of those words, especially fish. Friday at school, he was able to differentiate between shoe, banana, and shoe.  Also, after his teacher imitated a fish swimming with a fish toy, she got up and left the table for a second. Liam picked up the same fish toys and tried to copy just what he'd seen her do.

It really is the little things, isn't it?  These are all such small things in the grand scheme of life.  But, thanks to the fact that I've been gifted with children possessing special needs, I've been granted the ability to stop and really notice and acknowledge them for what they are.  That fact alone makes it all worth it.

Thursday, March 3, 2011

If CJ Were a Dog

I've been saying for years that CJ is "different", and not just Deaf different. He's different in another way that I just can't put my finger on.  While all of my children are special, there is something about CJ that is almost tangibly obvious that he is meant to be something. I can't explain it, and I certainly don't think he's more special than any of his siblings.  Just "different".

CJ has always had an uncanny knack for knowing when a person needs him.  I don't mean they need him to help do chores or anything like that. I mean they need him and his kind of love in their life.  There have been people who I think only CJ could really ever touch, and bonds made that I wouldn't have seen coming in a million years.  His friend, Jim, is one of those examples.  Jim has a big heart, so it isn't like he is one of those that no one else could ever get through to, but it's the bond that CJ and he have that is so impressive. Here is a child who, at five years old, started to form an attachment to a gentleman and his wife at church who could be his grandparents.  He laughs with them, plays with them, and even writes songs with Jim.  They are truly best friends.  I hear CJ let out a sigh of loneliness every time he bites into a magic shell ice cream cone at Dairy Queen.  DQ magic shell ice cream is something he and Jim did together on a regular basis before we moved.

In addition to his knack for friendshipping, CJ is what I like to call a way way way way way...well you get the idea...outside the box thinker.  He prefers his shoes to be on the wrong feet and his pants to be on backwards.  No amount of encouraging will change his mind about that.  Art assignments with specifications always come home with lower marks because he has much grander ideas for the tools he'd been given.  He would much rather sleep in his closet or under the bed than in it.  Every meal must be made into a "salad" before being eaten, and he must pretend he's doing his own Food Network show while preparing his salad.  Every room, every book, every written letter, and every shirt must be decorated in some way.  He has his own special and very precise interior design ideas.  He even makes sure Rachel's doll house is set up to his specifications.

Why do I tell you all this?  Well, today his former Gifted and Talented teacher posted the video in this link  on Facebook and it got me thinking.  It is about a service dog who doesn't quite do things the way her trainer hoped that she would.  The dog knew her own strengths were elsewhere.  Rather than forcing the dog to live within her own specifications, she allowed the dog to become what she was truly destined to become and miracles began to happen.

I pray every single day that there will be people in CJ's life that "get" him. He's different. He marches to a totally different beat.  His imagination is endless. His love and enthusiasm and zest for life is contagious.  His ravenous hunger for learning can not be quenched by merely throwing him a bone. He needs a feast.  Indeed, if he were a dog, he'd be the dog in the video.

To those of you who are parenting your own "outside the box" kid, don't be ashamed or afraid.  Don't worry about what others want him or her to become. Embrace that sweet spirit.  Give that child wings and let him fly.  Just like Ricochet the dog, amazing miracles will happen.  I know because I've seen it with my own two eyes in my precious children, every single one of them.

Apparently I Need Votes. Can You Help??

I just found out last night that I'd been nominated as a blogger who happens to have something good to say. Who knew?!?!  I figured it was all said and done and then I just found out a few minutes ago that nominations are done,  but voting is going on.  If you like this blog, and you feel like it has something to offer to others, I'd love your vote.


You Can Vote By Clicking Here

Wednesday, March 2, 2011

Who Need Tonsils and Adenoids Anyway?

Liam finally got his tonsils and adenoids out last week as well as getting new tubes in his ears. He ended up having to stay for two nights because he kept struggling to keep his oxygen levels up, and that kind of thing totally freaks doctors and nurses out. They come running and shove oxygen up your nose right away if you drop below 88% oxygen level at any point. So jumpy, aren't they? Lol!

So far, I'd say he's doing okay. He has been VERY irritable and tired, and spent a couple of days refusing to eat or drink. I was worried that he'd have to go back for IV fluids, but apparently I did a pretty good job keeping him hydrated. Shocking! We appear to finally be over that hump now, and look forward to seeing what having clear ears and no longer having them blocked by tonsils and adenoids does for hearing. The doctor suspects that we may have bought him 20-30 db of hearing. I'm a little skeptical of it being quite that high, but anything is possible, right?

Anyway, I will be sure to continue to update as we get further hearing results in and complete our follow-up visit with the doctor. For now, I'm just enjoying the fact that he is super cuddly because he doesn't feel that hot. He's usually running non-stop, so having him slow down just the tiniest bit is a little bit of a treat. I know. Delighting in my child's discomfort makes me some sort of Mean Mother of the Year. I'm okay with that. Snuggle time is worth it! And besides, who needs tonsils and adenoids anyway?

Two Steps Forward, One Step Back

I'm pleased to announce that CJ's hearing aid is back and seems to be helping him tremendously. Actually, we got it right after the New Year, but I haven't been so great about blogging. (Look at me doing a great job at catching up, though!) He was so very excited to get it just in time for snow because he could wear it sledding and not have to worry about his cochlear implant flying off as he whisked through the air at speeds upwards of at least 2 miles per hour.

His teacher and Deaf ed. instructor as well as his speech teacher all report that he is much more accurate in his hearing with his aid on. This is GREAT news, and I'm so delighted to hear that he's finally doing better and has hearing on both sides. Well, we think he has hearing on both sides now. So, having the hearing aid in and functioning represents the two steps forward. We're always grateful for two steps forward, right?

It wouldn't be life if there weren't a little opposition, though, so we must prepare ourselves for one step back. We took CJ today to his audiologist to make sure his aid was programmed to the best possibility capabilities and to check on the status of his processor. While he was very compliant, they never did get to test the aid. The audiologist ran a test called NRT (Neural Response Telemetry), which checks each electrode in the implant to be sure it is functioning correctly. Here is a better explanation of how it all works.

We have done a few tests before and it appeared that some of the electrodes might not have been working, but attributed it to the fact that not all 22 electrodes fit into his damaged cochlea. This time, though, it became very clear that only TWO of his 18 possible electrodes are working. TWO!?!? This is definitely a big fat UH OH! The audiologist was going to be meeting with our doctor today to determine what to do next. The plan is more than likely to do a CT Scan of his cochlea to see exactly what is going on. That's the only 100% accurate way to be sure what is happening, but the suspicion is that tissue has grown over some of them or perhaps nerve endings have died...or something like that. If that's the case (which we have a sneaky feeling it is), our only option is to remove the current implant and re-implant him.

The baffling thing is that he passed his hearing test as if it was all working. We think there is a chance the other 16 electrodes haven't been working for a LOOOOONG time, and he has learned to compensate for that. I remember him telling me over and over that it didn't work, and I would adjust his processor for him and he would tell me thank you and walk away. Apparently that wasn't quite enough.

So, we've taken one step back...maybe. I hate that he may have to endure this surgery AGAIN and be retrained to use an implant, but I'm grateful that technology is there to help him in the first place. And, even with one step back, two steps forward is still positive progress. We always love positive progress, right?

CJ Met a "Celebrity"

About a year ago, I got an e-mail from a complete stranger asking me if her friend could use my blog as a link for a project he was doing for an Eagle Scout project. I tend to go with the flow, and certainly didn't mind him using it. Shortly after that, I got an e-mail from the scout himself asking me more questions about myself and my family. He figured out that, like him, our family is Mormon. He told me more about himself, too.

David is a Deaf teen who used his Eagle Scout project to create a place where Deaf teens and families could come together to share stories, make friends, and support one another. The name of his site is, and it has really taken off.

Over the course of time, CJ was lucky enough to be able to visit with David via Skype and really enjoyed talking the poor guy's ear off. David, being the patient guy that he is, always listens intently to all that CJ has to say. In CJ's mind, David is something of a celebrity. After all, he is in his computer. That automatically makes him a celebrity, right?

Another interesting thing that has happened over the year is that we ended up moving to about 45 minutes from where David is. Byron and I met him last April when we came looking for homes, but the children weren't with us. CJ was very disappointed to hear that we'd "hung out with the dude that has a cochlear implant and lives in the computer".

Sunday night, CJ finally got his wish to meet David. We had the pleasure of being invited to his Court of Honor, and took all five kids with us. CJ walked in and was a little confused trying to put David's face to where he'd met him before. Then, all of a sudden, his whole face lit up as he announced "Hey! That's David C! He's my friend in the computer!! Do you think he has missed me and is excited to meet me?". Yes, CJ. I do think David was pleased to meet you. More importantly, we're so grateful to have David as a mentor and example for our children.

Congratulations on a job well-done, David! You are truly an inspiration to us all!!

Awww! I Feel So Loved!!

I've been so busy with the kidlets that I've been woefully neglectful to blogging. I'm back on the bandwagon now, though, and have LOTS and LOTS to say! Anyway, I came and logged in tonight only to discover that I'd been nominated as a good blogger. Who knew? At first I thought it was spam, but then I click on the link right here. I have no idea how it happened, but want to THANK YOU all for following and reading this blog. I hope it has been as helpful and HOPEful to my readers as it has been to me. I feel very loved and lucky today!