Keep Your Kids Inside When Mowing the Lawn

Yesterday I mentioned Jude in my post about having a special needs child.

11046577_10153020415486902_6667276987631333604_n

While Jude has always been special, adorable, and loads of fun he wasn’t born with any disabilities or particular medical issues. However, just over a year ago he lost part of his legs due to a tragic lawn mower accident. I will never forget the day I got the message from my friend Jen last summer. J and I have been friends with this couple for almost 10 years now. Jen even contributed to the Messy Mom blog during my Lots of Hope in a Little Home series by allowing us to peak into her house and catch a glimpse of some of the brilliant strategies she uses to homeschool in a small space.

 

1186028_10151666828731902_1382943661_n

This was one of the photos posted on my blog. That’s Jude on the far left. Now they have FIVE kids.

 

As I said yesterday, there are so many ways that I can relate to their story. I learned that SJ was deaf just after I had discovered that I was pregnant. When her surgery was scheduled I wasn’t sure if I was going to go into labor! Luckily, Ezie came early. Weeks later SJ got her first cochlear implant. The hospital gave us a little wagon for Ezie to sleep in so that he could stay with us in the hospital room after her surgery.

When Jude had to have his surgery very soon after the incident Jen was VERY pregnant. She even had to switch the hospital that she had originally planned to give birth at so that she could be at the same hospital as Jude. Their story really is a miraculous one. I won’t go into details because she has graciously agreed to do a guest post sometime which would be awesome! This whole family just radiates the love of Christ and their story has impacted so many already!

In fact they traveled across the country not that long ago to be a part of a campaign called Limbs Matter which raises awareness about lawn mower safety.

First of all, the local news station did a really great story last year with a follow up this year and I definitely encourage you to watch the clip.

Also, here is a video from the public service announcement they were a part of. It explains what Limbs Matter is all about.

The message is clear and simple “Keep your kids inside when mowing the lawn”. These kinds of irreversible incidents happen on a DAILY basis. I love Greg’s (Jude’s dad) message that he shared along with this video on Facebook

“Here it is.. Please share this friends! Had you asked me the day before our accident if I would ever back up over one of my children with the mower I might’ve chuckled at you and said, “Of course not I’m safe!” Well here we are with a double amputee. It can and does happen. I’m not a fear monger but I do hope to get the stats of these accidents going in the opposite direction.”

By the way Greg is the one with glasses at the end and you can probably recognize Jude from the shoes.

Greg is totally right. They are not fear driven people. They are also really responsible and cautious. Knowing this family on a close personal level I can say that it could happen to anyone. Accidents can and will happen, but as these families have conveyed if they help one child or one family not to go through this then it’s totally worth it. So spread the word about Limbs Matter. Share the videos and go like their Facebook page.

I am so proud of Greg, Jen, Jude and their whole beautiful family. Jude is such a fighter. He really does NOT quit and he is so strong and active. I can’t wait to see what he accomplishes next!

18296_10152817391526902_1644410267713627837_n

By | September 1st, 2015|Parenting Tips, Special Needs|2 Comments

Living in Holland (Thoughts From a Special Needs Mom)

If you have a  child diagnosed with some form of special needs then you have probably come across the “Welcome To Holland” essay by Emily Perl Kingsley. Basically it compares the shock of finding out your child has a disability to the feelings you would have if you planned a trip to Italy, but landed in Holland. The idea behind the whole analogy is that Holland isn’t BAD it’s just different and may take time to readjust your original plans and learn your way around.

The comparison applies to my situation well. I thought I was raising a perfectly “normal” (for lack of a better word) child the first two years of her life before I learned that SJ was deaf. I was speaking Italian, bought all the guide books for Italy, and really believed I was in Italy until that point which I consider my crash landing in Holland.

I have known about SJ’s hearing loss for 3 years now. The 2 1/2 year mark was a significant threshold for me because at that point I knew that my daughter was deaf longer than I knew her as (I thought) a hearing child.

It really does get easier. I have an appreciation for Holland. I’ve met lots of new friends here and learned so much. I’ve got the Holland guide books and maps now. I might as well have a tshirt and bumper sticker declaring my loyalty to Holland! There are moments though. There are moments you remember this wasn’t your original destination. I am being candid because I know I am not the only special needs mom going through this.

For example I have never babied or coddled SJ for her disability. She can truly accomplish anything she wants to do. She has been learning to swim this summer and let me tell you she is a champ. She fearlessly tackles this mission with great passion and fervency. She does so without the use of her cochlear implants so she is completely without hearing the whole time. I try to sit by the pool for a little break and she will tug on me and sign  “Practice! Practice! Mom, practice.” I see her going after it with all she’s got and when she comes up for air with the splashes of water blurring her vision I scream “Good job. Take a breath. KICK! KICK! KICK! You’ve got this!” but I know she can’t hear me. She can’t even read my lips or see me with the conditions that we are working with in that moment and I have felt helpless. Similarly, when my three kids are going to sleep (they share a room for now) I lie there in the dark with them for a while and Ezie says he wants to pray. After he finishes he wants his sister to take a turn. I tell him SJ can’t hear us right now because she doesn’t have her implants. If it were light it would be different because she reads lips so well, and with her implants she is just communicating non stop, but the next night we went through the same thing and Ezie said SJ needed to get her implants. He’s two and just starting to verbalize more himself, so it’s kind of heart breaking to hear him process all of it for the first time. Add to some of these emotions that SJ is starting kindergarten and she can’t go to the same school or have the same opportunities as her brother and it’s just another layer of Oh yeah, I was supposed to be in Italy.

IMG_5194

I know I shouldn’t feel guilty sharing some of these stories, but I do because we are so blessed and I love SJ exactly as she is. We are to the point now that if I try to think of what life would be like if she weren’t deaf I absolutely can’t wrap my brain around it because it’s a part of who she is. It’s like trying to picture what she would be like if she had been a boy. That’s just not who she is and I don’t want to change a thing.

As far as the little bumps in the road, we can purchase special gear that she can wear in the water to swim with her cochlear implants on. We can make sure everyone takes a turn praying in bed before SJ takes her implants off. She goes to a phenomenal school, and will have tons of wonderful experiences this year in Kindergarten. These are really minor things, but as in the Holland analogy it’s different and it takes some getting used to.

I have a friend whose son just crossed the one year mark of being a double amputee and that family has the most incredible testimony.

11046577_10153020415486902_6667276987631333604_n

I have loved cheering them along as I have watched all that their little man has achieved and I can’t wait to see what comes next. They have a caring bridge site where they post updates about Jude’s progress. Reading some of their experience has been like reliving my own. Even though SJ has artificial hearing and Jude has artificial legs there are just TONS of similarities.

I don’t know it all (that’s for sure) but since I feel like I am a couple years ahead on this journey I shared with my friend what I have come to realize after being thrown into the world of special needs parenting. I wanted to encourage her that just because it’s been a year doesn’t mean that you should be completely adjusted and move on. It’s been 3 years since SJ’s diagnosis and we are still in the transition stage. I look at the timeline like this Old normal, shock, transition (or adjustment, or adaptation), and then new normal.

processing stages

We spent just over two years living in the old normal, there was probably a year of living in shock and just doing my best to stay afloat. The last two years have been transition and we’ll be here for a while. I feel pretty darn close to “New Normal” but we still have such a long way to go. I feel like for us that will be when she goes to main stream schooling. I’m sure it looks different for everyone and more experienced moms could give a lot more insight into all this and the multifaceted layers. I am just learning, but this is my message for those in similar situations. Don’t feel like you have to rush into coping or adjusting. It’s going to be uncomfortable at times for some more than others, and somedays you are in Holland with a map from Italy. That’s okay, you will get there. I will get there. Our precious babies will get there and boy will we have stories of all the adventures we’ve had!

By | August 31st, 2015|Motherhood, My Life, Parenting Tips, Special Needs, Uncategorized|6 Comments

Ideas for Helping Kids With Daily Routines

“Routines involve repetition.  Repetition involves predictability. Predictability involves stability. Stability involves security.  Kids crave routines because routines make kids feel safe and secure.” – Maci Elkins

When I was a new mom I read “Baby Wise” which is a book about getting your little bundle on a schedule from the beginning. I quickly learned that that approach would NOT work for me. I am the messy mom. Laid back is my middle name. Just call me The Messy Laid Back Mom. Actually, don’t call me that.

The fact is we have had to be flexible because the past 3 years of our life has demanded it. On the other hand, as my babies get older and more independent I realize they require more routine to help them navigate through this unpredictable world. So this week I have been focusing on the topic of routine and structure, but sometimes (or in my case most of the time) that concept is easier said than done.

The other day my friend Tiffany posted this question-

What do you moms do with your kids after school? In my house, there’s just a lot of fussing, boredom, and people complaining about doing homework. Would appreciate your ideas. THANKS.

I already shared our morning and afternoon routine, but that isn’t even half the battle. You can schedule your day down to the minute but how do you get a rowdy bunch of little ones to go along with your plans? In Tiffany’s case this means 4 kids, including 2 year old twins and 4 and 6 year old boys. There is certainly no easy answer to that question, but I can tell you what has worked for me and share some other ideas that I found online.

For my family, it’s all about the timer/alarm. I have about a dozen alarms on my phone that go off throughout the day. These alarms are set for everything from just waking up to reminding me to go get the kids from school. All of those things that I listed yesterday are all alarms on my phone.

 

 

alarms

 

Granted, if my volume is down or my phone is in the other room I may not hear it, but I usually have my phone with me and these are activities I am anticipating anyway so the phone is more of a backup.

My oldest son made the system a little more fun last year by adding emojis and special ring tones. This was totally his own doing by the way. He also added more alarms that said “Too late” or “Really really late!!!!” with little screaming emojis… which I deleted. He knows us too well.

I love the alarm sound options. I use the ducks for bath time and the robot for when it’s time to leave (my mom mentioned that it sounds like it is saying “beep-ba-beep Time To Go” and now we sing along when it goes off. Also, the crickets are a great signal that it is time for bed. As a bonus the kids love it when they have a day off school and my alarms are still going off because they are set for every weekday. They love to laugh and joke about it, “Uh-oh. Time to go to school- NOOOO!” It’s a fun reminder of the responsibilities that they are off the hook for on that special day.

So the kids get some visual and auditory cues that times up and we are moving on to the next activity. It’s even a sensory tool in some ways because the phone vibrates and at times I have had to bring it up to my daughter with hearing loss to let her feel and see that the alarm was going off. Last year I wrote a post called The Magic Kitchen Timer . I talked about how the timer is a great alternative to just nagging and screaming because a machine is not an emotional being. It can’t be offended or manipulated.  The routine becomes more about the clock and less about you just being mean. Your kids will still whine and protest, at least mine do. And you will still have to nag at times. For me though, I feel so much more prepared and armed when I have my timer to blame. Hey, the timer said times up, not me!

*I repeat, this has not eliminated all struggles in our home. Some days are better than others. Long term results have definitely been positive though or I would not have kept it up for the past three years .*

Here are a few links to some other schedule incentives that I thought looked promising. 

Pill box reward tool by The Inclusive Church. 

pill-box-rewards

Having treats for every little thing might be overkill on a daily basis, but this system was designed for special needs kids in a church program and for those situations it seemed pretty cool.

 

For older kids you could just hang up a list. This printable schedule by Smashed Peas and Carrots reminded me a lot of our routine.

free_printable

 

I thought this clock looked like a great idea to give kids a visual.


colorcodedclock
The fussing, boredom, and complaining that Tiffany mentioned is not in any way unusual and unfortunately somewhat inevitable, but hopefully these ideas can help.

Maybe you have a creative solution of your own. Please feel free to share it in the comments. It might be just the thing another mom needs to hear!

 

By | August 27th, 2015|Parenting Tips, Schooling, Special Needs|5 Comments

The Deaf Elephant in the Room

All of my pregnancies and deliveries have been just about textbook, but there is one aspect of my pregnancy that is unusual.

IMG_4899

It’s not something I want to make a big deal out of all, but I feel like it should be okay to acknowledge and talk about openly. The proverbial elephant in the room if you will.

My entire life I have been a carrier of a genetic mutation called connexin 26 and so has my husband, but we never knew it until three years ago. You may be a carrier of some kind of genetic abnormalities too. The thing about being a carrier is that it doesn’t affect you. From what I understand we all have genetic abnormalities. I believe it is approximately 1 in 50 people that have Cx26, if I remember correctly. I can’t seem to verify this information online so don’t quote me on that statistic. Anyway, it’s not all that uncommon, but like I said carrying only one copy of the gene doesn’t effect you, however if you have a child with someone else that has a copy of that gene you have a chance that you will pass one gene from each of you to that child. If the child has two copies of the mutated gene then they will be deaf. There are a lot of diseases and genetic abnormalities that work this way, so you may be familiar with the science behind it already.

c4fdcc05d8bca9777767e2d3959ea54c

Here is how it works when you have Connexin 26.

We have a 1 in 4 chance of having a child that gets two copies of the normal genes which means no genetic hearing loss at all, not even carriers (as shown in blue). 

There is a 2 in 4 chance of having a child that receives 1 copy of the genetic mutation (shown in purple).

Lastly we have a 1 in 4 chance that the child will receive 2 copies of the genetic mutation and be deaf (shown in red). 

I wrote all about it here on the blog when I first found out.

We never suspected that SJ’s hearing loss was genetic because we had no history of deafness in either of our families. She had testing done just before my due date when I was pregnant with Ezie. I remember talking to our speech therapist saying that I didn’t know if I wanted the results before the baby came because if it was genetic then I would be worried. They assured me that I did not have to hear what the results were until I was ready and it could wait. My response to that was, yeah right I am not going to have the patience to wait one extra second for an answer! I was just too curious about how all of this happened. In the end the problem took care of itself. Ezie was born passing the hearing test and then about a week later I learned of our genetics so I didn’t have to worry.

I say all of that because this is the first pregnancy where I am well aware of my odds. This child could be deaf and I know it. In fact I know lots of families from SJ’s school that have proven that it doesn’t really matter what the statistics are. The chips will fall where they may (if that’s how you want to look at it). I know a Cx26 family where 2 of their 3 children are deaf, one where 2 of 2 are deaf, another that has 3 of 4 even! So even though J likes to joke that we have our 1 out of 4 so we’re done, it obviously doesn’t really work that way.

It’s nice to have other families in the school that I can talk to because they’ve been in my shoes. I know one mom whose first two children were deaf and the last one was not. She tried to make nothing of it, but she distinctly remembers her last baby going berserk in her belly when the fireworks were going off on the 4th of July and she felt like the baby must be able to hear. She was right. I know another mom who said that with her 2nd (out of 3) who was deaf she didn’t have any clues until after the baby was born, but she could tell almost immediately after knowing what to look for with her other two.

Honestly, it’s not something I think about too often. I am going to be fine with it either way, but of course we would love it if the extra challenge of hearing loss was not something that this child or our family has to face. I was reading recently in the updates about the baby that her hearing is fully developed now. The book encourages you to talk to your baby and play music for your baby. It says that the baby will be able to recognize our voices when she is born. I paused in that moment and just allowed the emotion to well up into tears.

IMG_4879

We do talk to our baby girl, and again I want to stress that Connexin 26 is not something I focus on, but the fact is- it’s a possibility. It’s information I never had to face when I was pregnant with the other three.

Who knows what will happen. The irony of all this is when SJ was a baby we had her vision tested because Z had such totally unexpected vision and eye problems when he was a baby that he actually had to have surgery. There we were. worried about her eye sight when it turns out that she had hearing loss the whole time! So the moment I think I prepare myself for one thing a completely different issue arises. All I know is that each one of our children are hand crafted by God. They are fearfully and wonderfully designed and he knows each of us in the womb. I put all of my trust in the Lord and I have a peace about it. I really do.

We will have the standard newborn screening at the hospital just like we did with Ezie. I probably won’t announce it right off the bat if there are any concerns. I just want the initial focus to be on the baby and all the fun aspects of birth announcements. If we do have anything that needs to be addressed medically, we’ll tell everyone soon enough after our family has had time to process things privately.

So that’s about it. I know that was a lot of info and this is quite a personal update, but I did want to get it out in the open. As far what we can tell so far the sweet little baby girl is healthy and the perfect measurements for my due date (which is 99 days away). I am 26 weeks and almost done with the 2nd trimester. She will be here before you know it. We are overjoyed.


IMG_4866

By | August 17th, 2015|Special Needs|6 Comments

Free Signing Time Video

I have great news for you all today! Signing Time has a released a  FREE Back to School Video Download. It’s hard to believe that one of the stars of the show (little Leah) is now going off to college in real life! She was 4 when they started the series and so this free download is in celebration of that wonderful milestone.

signing-time-free-video-5

This video is perfect timing to prepare your little one for school while teaching 30+ signs as a bonus. I want to do everything I can to spread the word because I love Signing Time so much and if this video reaches 500,000 new families by October 1st then they will realease a second FREE download.

Downloads are great because sometimes you need that a quick movie available on your phone or tablet when you don’t have wifi access (like on an an airplane). Some of you moms of littles know what I’m talking about!

Just to give a short personal background story, the Signing Time series has been very instrumental to my family and will always hold a special place in my heart. Not only have they helped all three of my children to learn some of the foundations of ASL, but there was a season where I watched the videos over and over, pausing and rewinding parts until they stuck when SJ was first diagnosed deaf. My husband, my parents, and I would all gather around for our Signing Time lessons and we are adults! That was a big part of how I was able to final speak with my baby girl for the first time.

I won’t go into all the details but SJ wasn’t diagnosed until she was 2 and she didn’t get hearing aids until she was 2 1/2 and even then they didn’t help. It was a year before she began to hear via use of cochlear implants! So the first three years of her life sign language was how we communicated.

If you are interested in your child being exposed to sign language for any reason at all (and there are many benefits by the way) then this is a great time to check out Signing Time because the video download is absolutely free. There is no obligation to buy anything and it’s really fast and easy to get on your computer or other electronic device instantly.

Our family owns several Signing Time videos, we also have checked them out from the Library for ones we don’t own. We’ve seen Rachel and the gang on Nickelodeon and PBS as well as Netflix, but coinsidentally the school episode is one that is NOT on Netflix and we don’t own it. SCORE!

If I had to give one critique (it’s not really a critique at all, it’s just a personal difference). We use all the signs from Signing Time except for some of the finger spelling ones. For example there is a video where they teach the sign for “Toy” and they finger spell it “T-O-Y”. I own a signing dictionary and have local deaf friends that sign it the same as “play” but with the letter “T”. That doesn’t mean that finger spelling it is wrong AT ALL, I’m sure it’s more accurate to some degree. ASL is complex in that there are many different regional dialects and acceptable variations.

For SJ we used sign language as a practical bridge for communication and she still is not at a place where any fingerspelling has worked for her. So we are more likely to use what is called a “home sign” before we would learn a bunch of fingerspelling words. From what I understand this is not uncommon for young deaf children the same way hearing children have variations of words that they use before they are able to articulate. I mention all of this because the “Back to School Video” finger spells “Glue” and “Pen’.

Sorry, I’m rambling now, but I really do believe in this program and I’m thrilled to share this awesome deal with all of you. Again, the full length video is “Signing Time Back to School” and you can watch it instantly and download it to keep as your own. Just go to

www.signingtime.com/free-video

signing-time-free-video-1

Oh, and don’t forget to share this special offer with all of your friends.

 

 

 

 

Meeting a Project Runway Fashion Designer

A couple years ago my best friend called me to let me know that there was a deaf designer on Project Runway that signed and had a cochlear implant. I had never watched the show before that or since then, but I religiously followed that entire season rooting for Justin LeBlanc the entire time. At one point he was actually eliminated and it was very emotional. I might have okay, I did shed a tear, but then he was able to get back on the show because you know how those reality shows can go.

 I was thrilled to see a role model on a popular TV show that was deaf like my daughter and I even blogged about how I was a big fan. So when I found out that Justin LeBlanc was coming to my SJ’s school I was ecstatic! I had the opportunity to photograph the event for the school. After LeBlanc was introduced to the kids (grades K-2) they had a Q&A which mostly included 

Can you make shirts?
Can you make a hat?
Can you make shoes? 
Did you make your clothes?
Did you make my clothes? 
Can you make toys?
And lastly, How old are you?

 The answer is yes he can make just about any clothing item, but no he did not make the clothes anyone there was wearing, and he is 28 years old.

 Afterwards LeBlanc helped all them decorate their own hat. It really was the coolest thing! It was like watching the mini version of Project Runway with all of them busily losing themselves in the fabric and materials.


Then came the fashion show! 

 All of the elementary age students walked down the runway in front of their classmates and other special guests. It was adorable to say the least. 

At the end LeBlanc shared a little bit more about his hearing loss and what his passions are.  I was able to get a picture and talk to him briefly when everything ended. In classic fan girl fashion I started sputtering out “It is SO great to meet you. I never even watched Project Runway until you were on it” and his response was “Yeah, me neither.” I have had a lot of PR fans ask about what he was like in real life, not that I hung out with him for a week or anything, but for that afternoon he was so polite, sincere, and always had this smile on his face.

His parents were there too. Whenever there is a deaf celebrity I am always most interested in the parents behind the scenes, because that’s what I relate to and I loved getting to visit with them. 

 I’m sure everyone there took away different things from the experience, but the highlights for me were hearing LeBlanc talk about how Project Runway was kind of like a designer summer camp for him because he had six weeks being completely unplugged. No cell phone. No social networking. No TV. Just hours upon hours spent working on clothes and really getting to focus on his craft, which he had never had that opportunity to do to that extent before. 

On top of all that channel 12 in Cincinnati was there. 

Much to my surprise they decided to interview me (I am the only woman in the video. It’s about the halfway point and they also show a short clip of SJ while I am talking). I’ll admit it was a little bit intimidating and definitely made me self-conscious, it was still a great experience though. The cameraman and anchorwoman were so personable and down-to-earth. You can view the video on their website. 

 Local 12 WKRC-TV Cincinnati – Top Stories

I really can’t say enough good things about the fashion show at Ohio Valley Voices and I do want to give credit to Justin Leblanc designs, Sewn Studios, and TJ Maxx for donating their time and materials. I know that it means so much to these kids and their families.

 I meant what I said in my interview

“It’s really inspiring to have someone that’s deaf that’s shown how successful you can be despite whatever challenges you may face. I think they had a great time”

By | March 10th, 2015|Hearing Loss, My Life, Special Needs, Uncategorized|14 Comments

How To Never Offend Anyone

I feel like I have seen it all when it comes to online links
touting things you should never say.
What not to say to a mother of twins
What not to say to a single mom
What not to say to a parent that has adopted
What not to say to a person with an eating disorder
What not to say to a person with an unusual birthmark
The last one I made up, but the rest are real, and I could go on
and on.  The more of these taboo comments that I came across, the more
I became fearful of hurting someone’s feelings. I recently saw one that
should have been right up my alley titled 10 Things You
Should Not Say to Moms With Multiple Children
The picture that goes along with the post is a mom with three
children and a grocery cart. Hey, that’s me! I go to the grocery store with
three children far too often. I like to joke that I am in my 30’s, but I can
still turn heads. The punch line is that I turn a lot of heads with the way my
kids behave when we are out in public. I have had at least 100 strangers tell
me that I have my hands full. It’s true though. My hands are usually literally
carrying things and figuratively juggling things.
“You have your hands full” is just one of the things
the article considered “tactless commentary from intrusive
strangers”. Another statement you are not supposed to say to me or
other moms is “lots of helpers” along with “Enjoy these
days. They grow up so Fast.” And last on the list is “the silent stare”.
If you read the article it explains why you should not say/do these things, and
I get where the idea comes from because I know it feels redundant when you
are on the receiving end. I have even vented about the cliché
statements before. 
So I came up with this idea. Instead of having all of these
“things you should never say” lists to sift through online. I have decided to
just sum it all up into one nice little politically correct paragraph.

 If you find yourself in an environment that is also
occupied by a mother with children, or a person with a disability, or
someone who has experienced tragedy, or is breathing, then you shouldn’t say
anything, unless it is from an approved list of one liners preferably
customized by each individual that would be receiving the
comment. And be especially careful of how you look at said individual.
Don’t look for too long to imply staring, or too short to suggest that you
don’t enjoy seeing them. In fact I would avoid looking at them at all. Then
again that could be the same as ignoring them, which could be considered
offensive too. Instead you might want to try not being around people.
Ever. 

I’m being sarcastic of course. Hopefully you can see where I am
going with this. I understand why lists like this are such a hit. Some of them
truly do raise awareness about certain misconceptions. However, more often than
not we just want people to know what to say to us because we are insecure,
tired, hurt, or fill in the blank. I even considered doing my own list of
“What to say when you see a child with a disability” because my
daughter is deaf and has cochlear implants. It’s kind of hard to miss and I can
tell that some people feel awkward around us at times. The problem with my list
is that I would encourage people to talk with me openly about their thoughts
and curiosities. I love answering questions and educating people
on what the cochlear implant is all about! However, I have lots of friends
who are parents of deaf children and some of them do not like talking about it.
Or sometimes it depends on the day! So there is no list of do’s and don’ts
because there aren’t just “Parents of Deaf Children”-period.
It’s more complex than that.
Similarly there aren’t just pregnant ladies, or women
who have had c-sections
, or biracial couples, or introverts,
or working moms. There are just people! Individual people. 
Sure we all belong to certain groups and stereotypes, but that
does not define us. We are way too complicated to be narrowed down to a list of
appropriate conversations. We are all people that will offend other people and
will be offended by other people. On the bright side we are also diverse people that get to learn from one another. We get to share space and have community together. We engage. We form opinions. We form relationships and even friendships!  

I hate the thought that people would stop interacting out of fear of offending. Sure, there are going to be some jerks out there that say ignorant things, but isn’t there a Taylor Swift song about that? Shake it off, right? Because at one point or another, you will be offended. It’s happened to me. There are also comments that I just could have done without. For example when I was pregnant with a girl after I already had a boy I would have thought the whole world joined together to celebrate the fact that this meant I was done having children. Which, obviously didn’t stop me. Still, at the end of the day, I would rather be annoyed on occasion than disconnected for life. 

By | February 2nd, 2015|Motherhood, Special Needs, Uncategorized|15 Comments

SJ’s 2nd Year of Preschool

I can’t believe this will be SJ’s last year of preschool. I never  necessarily even planned for my children to even go to preschool, but as you know SJ case is a little different. The idea that a year from now she will be starting kindergarten really shocks me! I suppose I am getting ahead of myself. One year at a time. I am so very anxious (in a good way) to see what this year will hold for her.

You may have noticed I have a page on my blog now that is dedicated strictly to SJ’s story and her current progress. I don’t have any recent updates because I feel like we have been at a stand still over the summer. I always keep a log of new words and phrases that I notice SJ saying and the last time I did an entry was the end of June. Maybe some of it’s because I have been too busy to notice, or maybe it’s because she was on vacation and out of school so she is just plateauing. Or perhaps this would be a slower time anyway. These burst of vocabulary breakthroughs do tend to happen in waves. I’ll be glad to have her back in school full time though, and not because I want to be away from her because I don’t. 

It’s just that I can tell a difference in her progress when 
they are purposefully working towards speech compared to the incidental learning that usually happens at home.




She has two new teachers this year. One is for academics the other is speech. I hate change and having school age children has forced me to adapt to new people on a regular basis. Bleh! However, I LOVED her therapist in Louisville, I loved her teacher in the toddler program, and her therapist last year, and I am sure these two lovely ladies that she is currently paired with will be just as nice of a fit. I already have a good feeling about it since SJ received a card addressed to her personally with a hand written note inside. It told SJ to her to let her mom and dad know that she will be in the classroom on a certain day and time and to come by to say hi. In other words, meet the teacher.

Last year’s teacher and this summers therapists. She will forever have a special place in our hearts!

I do have one little prayer request which isn’t really hearing or CI related, but it kind of is. SJ has always had huge tonsils. She snores like a 50 year old man and she has since she was a one year old. Seriously. However, we have had many experienced Doctors and Pediatricians take note of this fact without showing any concern. My mom brings it up a couple times a year because she just wants to make sure SJ is safe and her airway passages are clear. Then SJ’s team of therapists brought it up at our end of their meeting and told me to talk to her ENT about it at our next appointment so last week when I saw her Otolaryngologist I did just that.

He said that her tonsils are a 3+, and that is on a scale that ranges up to 4. So they are in fact big, but without frequent strep throat or sleep apnea (neither of which she deals with) there is no reason to remove them. In fact there is some kind of a cautery tool that they would normally use for surgery that cannot be used on SJ because of her implants. An alternative procedure would affect the coronary bleeding which is an added risk to consider when weighing how valuable this surgery would be to her. Once again it doesn’t mean that they are ruling it out and don’t want to do the surgery, but he is going to reevaluate in a year and see if she has grown into them at all. He said sometimes these things correct themselves with time. I don’t know why there always has to be another hand, but on the other hand he said there are advantages to doing the surgery while the child is still young. It’s easier on them, so we don’t want to put it off if it is inevitable.

Sheesh. Don’t quote me on all the details of that because I wrote down what the Doctor said, but I don’t have the paper in front of me. I just remember him saying to not worry about her for now because there is space in her mouth, so she is fine. It would be my heart’s desire that she would not have to go through another surgery if we can avoid it. I pray that this situation will be cleared up without any medical intervention. In the grand scheme of things it is not an earth shattering concern and I do believe God’s hand has her covered head to toe.

So that’s what is happening with the girlie. She has had a wonderful summer.

 I am sure she is going to be bummed to realize it’s over, but happy to be reunited with her friends. One week to go!

By | August 12th, 2014|Hearing Loss, My Life, Special Needs, Uncategorized|1 Comment

More Than Words Can Say

*This was originally written over a year ago. Sometimes I just need to write even if I keep it to myself, but today, on the 2nd anniversary of her diagnosis, I am ready to share.*

In the world of hearing loss I feel like the label “Late Identified” is a big red stamp across my daughter’s forehead. These days most deaf children are diagnosed through a brief newborn hearing screening before they even leave the hospital. Since SJ wasn’t born at the hospital we never had any testing done until she was over two years old. 

SJ at two years old, a month after she was diagnosed.

SJ’s birth was perfect. It was hands down one of the most amazing, beautiful, and spiritual moments of my life, but if I could change the past then I would have had a screening test done after the home birth.


The first seconds of SJ’s life!

 As with any treatment plan, like with cancer or autism, the earlier you can diagnose and intervene, the better. There are so many benefits to getting started at a young age when it comes to language, and we lost two years of valuable time. However, having those years of not knowing did have some benefits. 

When I blogged for the first time about SJ’s hearing, Amanda (from Oh Amanda) left me a link to a woman she called her hero. That woman was Rachel Coleman of Signing Time. I read her story, got several of her videos, and she soon became my hero as well. Her daughter Leah was also late identified because the hospital had taken a break from newborn screenings for a brief time before they became mandatory and that was when Leah was born. Here is what Rachel said about her daughter being late identified.

 “Was it meant to be? I don’t know. I wonder how over-protective and lame I would have been if they had handed me my newborn baby and said, by the way she’s profoundly deaf. Looking back I can see the blessing it was that we got to know Leah for her first year with the complete expectation that she could do anything, she was limitless. When we did hear her diagnosis “severe to profound hearing impairment” when she was 14 months old, we mourned. We cried. We felt silly. We couldn’t believe it. We thought there was a mistake. We hoped it would go away. We felt all of that and more at once! Finally we looked at Leah and she was still her happy beautiful self. And we recognized that for Leah nothing had changed. Nothing was wrong.”

Boy do I relate to that! When we first came to SJ’s school, one of the advisers had commended me on how well I’ve done at communicating with SJ despite her hearing loss. She told me that many parents have a hard time just talking with their deaf children and unknowingly tend to turn their conversation toward someone that is listening to them. I’d like to take credit for being so loving, but I didn’t know she was deaf.

 Another therapist was astounded by SJ’s cognitive abilities and said she had never worked with a deaf child potty trained at such a young age. I’d like to take credit for that too, but once again I didn’t realize I was potty training a deaf child (and besides that she initiated it). For over two years I treated her like any other baby/toddler. We didn’t fret. We weren’t trying to protect her. We weren’t taking action. We just loved her as she was, and in the mean time she loved us back and proved to be a very capable, thriving, joyous little lady. 

I know now more than ever how vital communication and language is. However, in those years we “lost” by not starting therapy or using hearing devices we also gained a lot and I learned a valuable lesson. She understood me. She may not have understood my words, but our love transcended all of that. Our hearts spoke to one another. I have always told my kids that I love them more than words can say and for SJ I’ve lived that truth. 

Building a Language

My first response before I even knew the degree of SJ’s hearing loss was to learn American Sign Language and teach it to her. I never thought it would be be easy, but my original expectations might have been a little unrealistic.

I was already familiar with baby sign language. I figured that if babies can learn to sign before they can talk then this sign language thing should be a breeze, especially for SJ because she’s brilliant! Come to find out it’s not that simple and it has to do with what I wrote about last week in “the Science of Language”. You acquire your first language by being immersed in it and it all happens easily and naturally. It’s called first language acquisition.

Babies hear MILLIONS of words before they ever say their first! They are observing, listening and mentally taking it all in for the first year or so. It’s a critical time developmentally. A deaf baby born in a deaf family is going through the same process except with a manual language. These children are typically raised in deaf culture so they see sign language happening all around them through their parents, teachers, and communities. One of SJ’s therapist says a child needs to see a sign around 100 times before it sticks. I thought I would simply show SJ some signs and teach her how to talk, but I am up against her natural urge of language acquisition which is to imitate, and for the past 2 and a half years she hasn’t seen any proof that the world around her communicates through sign language. Even now, I try to sign quite a bit, but we are still no where near the amount of oral words she would be hearing if she could. I’m not sure if I am making sense, but this whole first language acquisition thing was a recent epiphany for me. I just never thought about it that way.

Realizing your child is at square one trapped in world without language is a tough pill to swallow. It’s different than realizing that they can’t hear, it’s like Okay. Wow, we have a lot of lost time to make up. I explain it to people using Z as an example. Z started watching signing time and learning ASL along with us just a few months ago. As a 4 year old he quickly picked up around 100 words with minimal effort. I can ask Z What is the sign for share? and he’ll show me. The difference between him and SJ (besides that Z is 2 1/2 years older) is that Z already has a language. He knows what share means and has been learning about this word for years, now he is just attaching a sign to it. Just because SJ is deaf it doesn’t mean she is naturally more inclined to pick up sign language, it’s going to be harder for her because of the lack of immersion that I mentioned earlier. Anyway, that was my light bulb moment last month, but taking all this into consideration she is doing awesome. Sometimes I take for granted how much she does communicate with us through ASL. I need to document more of those precious first words that we are seeing from her.

On another note, we got the test results back yesterday and praise the Lord SJ’s brain and ear anatomy looks great. This means the hearing loss is not caused by any shocking unforeseen damage or malformations. That is really good news and now we can move forward with getting a cochlear implant, which is another big ol’ topic that I need to write about sometime. Just another curve on this windy hilly journey that we are on. There are ups and downs, pit stops, and speed bumps, but I am trying to take in all the beautiful scenery along the way and I wouldn’t trade it for anything.

By | September 6th, 2012|Babies & Toddlers, Parenting Tips, Special Needs, Uncategorized|2 Comments