Back to Schol!

The first day of school and with it come some major stress in our household! Our oldest daughter, Chelsea, made a huge decision to change school her junior year. I have to tell you that I am so proud of her in that decision. Foster has been attending a private school since Pre-K but Chelsea would never consider 'wearing those goofy uniforms everyday' (her words, not mine). Well, toward the end of the year last year, she approached us and said she thought she wanted to give it a try! What an answer to prayer! I have long felt like it would be a much better environment for her but only if it was what she wanted. Trying to force her into it would have been a huge disaster. It was a rough year for her, loosing Shelbie, seeing her other friends making poor choices, and another less than stellar experience with a poorly qualified math teacher. I think she knew she would be better off doing something different. That all being said, it doesn't make change any easier! The first day of a new school is scary! She was nervous but I am sure by now, she has already settled in and is making tons of new friends, because that is the way Chelsea is, but that is also what the kids at the private school are like, too!

Foster is in second grade and looking forward to a great year in his class. His very best friend, G., is homeschooling this year, so there is a little sadness that he won't see G. during the school day, but I have talked with is mom and we are going to get them together as much as possible. Foster is in the same class as G.'s twin sister so I think that will help some since he can 'keep in touch' by proxy. LOL!

Faith's school situation is still a little up in the air. I thought we had everything worked out before the end of the school year last year. ARD team had met, placement had been worked out, FM system decided on... until last week when it all fell apart! The plan was for her to split time between a mainstream pre-school and a school for kiddos with hearing loss, until another child with hearing loss applied for a full-time spot and bumped her (since she was part-time, he got priority). I am being told there are compatibility issues with the FM system and the school district is proposing what I consider to be a less than acceptable solution. Of course all this is coming down the pipe days before school is starting for her after months of thinking everything was taken care of! Friday I had my fill of it and gave in to my first 'totally-loosing-it-crying-breakdown' moment of parenting a child with special needs. I am sure it won't be the last! On Monday, I pulled myself together, dived back in and started dealing with it to get my girl what she needed. We haven't given up on the hearing impaired school yet, so hopefully we can get something worked out. On a more positive note, we ordered new ear molds last week and Faith chose pink and purple swirls with purple sparkles! I can't wait to see them! LOL!!

Ella is also starting school this year! Yes, the baby is going to go one day a week to the same mainstream pre-school that Faith attends. I think she will love it; she loves being around other kids, especially ones more her size since Foster and Faith are always running over her!

Since this is our first 'new school year' as a family with children with hearing loss (at least that we knew about it), I am trying to find that balance of informing the teachers, coaches, Sunday school workers, etc. about hearing loss, hearing aids, what works and what doesn't and how it affects not only learning but behavior too. How much information is enough without giving them so much it overwhelms them? I also don't want the people who work with my girls to fall into the mindset of defining them by their hearing loss, they are so much more!

Anyway, it's almost time for the first round of pick-ups, so I gotta run! Yes, typical of the back-to-school routine, it never slows down! LOL!!

Ella's Big Day!

June 12, the day Ella got her hearing aids! Now since Ella is only 9 months old it was not the huge hearing breakthrough that happened with Faith, but I do think she can tell the difference in how she hears.

The first photo is of her sitting in Granny's lap is just after the first aid was put into her left ear for the first time. Her eyes got big and she looked around; it seems by the look on her face that something is different as Granny is talking to her. She quickly decided, however that putting in the earmolds was no fun at all, and having stuff in her ears was less than pleasant. Ella may hold the record for figuring out how to remove new ear molds faster than any other 9 month old! After a while, she began bothering them less and less. Maybe she will eventually get used to them (I hope!!). She has also already figured out that they make handy teethers.

That brings me to her other big news this week; Ella has teeth! Her first two bottom teeth came through on Saturday. She is all of a sudden much more interested in 'real food'; I guess since she now has teeth she thinks that she ought to be using them! Last night she sucked/gummed/teethed all the inside mushy part out of a french fry and enjoyed it very much! LOL!

Faith also got her new hearing aids yesterday! Now, all three of us have matching pink Epoq XW's (the girls didn't get a Streamer though, that's Mom's toy!). We all have sparkles in our earmolds too, but they are all different collors: Faiths are pink with pink sparkles, Ella's are light pink and clear swirled with silver sparkles, and mine are clear with pink sparkles! Faith said she could tell a difference in how she hears between the Safran and the Epoqs. I think it was a good decision to go ahead and move her up (now just praying insurance pays the difference, I could fill a whole nother blog on my adventures with the insurance company! LOL!). Faith is really looking forward to her camp at the Hearing School next week; I think it will be good for her, even if it is just that she gets to be around other kids with hearing loss (but I know it will be a whole lot more!).

The 'Process'

My cousin has a friend who has a new baby that has been diagnosed with profound hearing loss. She told me about it a get-together we were at last night and I couldn't stop thinking about this family; I felt a really strong need to reach out to them so I called, got their number and called them. I had a wonderful conversation with the dad and I look forward to talking with the mother soon. Connecting with another parent who has been there, done that, and got the t-shirt helps so much when you are facing issues with your child. Talking to someone else who 'just gets it' without having to explain all the acronyms and the reason for all the tests and why they look for all the seeming unrelated things that might actually be related to hearing loss... yeah, it helps

After talking with this totally awesome dad (hey, he was at home on a Saturday afternoon by himself with the kids in the middle of changing a poopy diaper when I called! That's pretty awesome in my book! LOL!), it caused me to reflect on our own journey and how I got to where I am in relation to the girls' hearing loss. I realized that I had blogged mostly about the process but not about the 'process'. What I mean is, I have talked about the appointments and tests and medical stuff - the physical process we have been going through - but I haven't really talked with anyone about the emotional process you take as a parent with a child diagnosed with hearing loss.

I think I'm doing okay on the outside, at least I hope I do, I feel like I hold it together pretty good for the most part but that doesn't mean there hasn't been bad days; days when I want to stomp my feet and shake my fist and say "Why me? Why my children? Why US!?!?" So just a glimpse into some of the millions of things floating around in the mind and heart of a mom with two children with hearing loss:

Sheer terror - At the initial diagnosis, hearing the words "your child has severe hearing loss" really initiates almost a fight-or-flight response. You don't know what to do, you don't hear most of the words the professional tells you after that, you certainly don't know what questions to ask, and since neither the fight or flight response is acceptable in a medical office from modern human beings, your brains does the next best thing and just goes into a kind of shut-down surreal sense of other-world-ness. It's my opinion that this is your body's way of removing you from a situation that you haven't figured out how to handle yet since you, as a modern human being, have sufficiently suppressed the urge to kick the audiologist in the shins or run screaming from the office.

Depression - I go into kind of a survival mode when I am overwhelmed and depressed, doing the bare minimum to keep the family and household going. I am told that individuals and parents with children of hearing loss go through a grieving process and it is normal to feel all the same emotions as a person who has lost a loved one. It makes sense because loosing something as important as a basic sensory function is a pretty big loss!

Guilt - Why didn't I catch it sooner? I thought something was wrong earlier, why didn't I push for a more thorough hearing evaluation then? I mean I live with hearing loss, I should have known!!

Frustration - Why won't anyone listen to me? I knew something was wrong! Why didn't the doctor say "unreliable" on that first screen instead of "Oh, she just lost interest". I mean I LIVE with hearing loss, I KNOW what I am talking about!!

Guilt(Part 2) - As the parent, is there something I did? Could I have prevented it? Was it something I took/didn't take, ate/didn't eat, breathed, whatever, while I was pregnant? Was it my genes? This is true for me especially since I have hearing loss myself, I feel especially responsible for the girls' loss.


Frustration (Part 2) - Why can't I get an appointment sooner? Why can't I get straight answers from insurance? Why won't insurance do what they say they are going to do? Why does it take so long to get test results? Why can't someone tell my why this happened and what to expect? And where to we go from here?

Relief - It's only hearing loss, it could be so much worse. There are so many parents facing much worse circumstances.

Guilt (Part 3) - Why am I so bent out of shape; it's 'only' hearing loss? It could be so much worse! I should be thankful.

Vanity - Will people still think I have a beautiful baby when she gets her hearing aids? Will they see her gorgeous blue eyes or will they only see the aids on the side of her head? Will people make assumptions about her that aren't true? Will they see past their aids and see what wonderful, beautiful children they are?

Fear - Will they be okay? Will they learn to talk 'normal'? Will kids make fun of them for being different? Will they have a problem with school? What do we do when we go to the pool?

Now I know there is a while lot more, this list just touches the tip of the iceberg. A big one that I left off was "denial". I honestly didn't spend a lot of time with this emotion, I really think I knew in my heart long enough before I could get anyone else to take it seriously that denial was pretty much beyond my capability. My husband, on the other hand, lived here for quite a while. I think that is somewhat normal for dad's though. It seems that mom's have that sense, they know something isn't right, and when their fears are confirmed, they go into hyper-mothering mode and want to comfort, research, prepare, and reach out and connect with other mom's facing the same thing. Dad's just want everything to be right. Dad's fix things and if it isn't fixable by Dad then they don't know what to do with it, so they deny anything is broken. (I'm not saying kids with hearing loss are broken.)

So, I realize this post has focus a lot on the negatives. There has been a lot of surprisingly positive moments on this journey as well. Happy, joyful times that are so hard to explain to someone outside of the world of hearing loss; the look of joy on Faith's face when she really heard for the first time, hearing a string of consonant babbles for the first time, finding out insurance would pay for much more than we thought! But my intent was to be real, and I think a lot of times people only put out the 'sunshine and roses'. I think it is okay to go through some negative emotions as long as I don't get too hung up on them and stay there. Recognize them, deal with them, then I gotta pull up my big girl panties and get on with life! My family needs me. My kids need me. They need to hear me tell them that they are fearfully and wonderfully made by a Creator that doesn't make mistakes. He has a plan bigger than ours and he knows the opportunities that lay ahead for my children, hearing or not. All we can do is trust in that.

Foster knows Laminin

Foster came in to the kitchen Monday morning, it was Memorial Day so there was no school and I let the kids sleep until they woke up. So in he comes and the first thing out of his mouth this morning was "Mom, there's something on the computer I have to show you!" No "good morning" or "what's for breakfast?", just that he had to show me a video he saw a school. So he goes into the computer and starts to looking for the video he saw. Well, I ask a few questions and he said his teacher showed them (so I breathed a sigh of relief, these days you never know what kids will come across on the internet) and it was on "God Tube" (another sigh of relief!). I pulled up www.godtube.com and then we set about looking for his video. I asked what it was about and he said "laminin". Well, I have a biology background and I wasn't even sure what laminin was, but he told me it was a protien so I typed "laminin" into the search field on God Tube. Several vidoes pop up, a couple of them showing a man with the title "Louie Giglio - Laminin" beside the photo.

"That's it, Louie Giglio, that's the video I want you to see!" Foster said excitedly!

So I played the video and listened. The more Louie talked the more amazed I became. Yes, laminin is awesome, but what was even more awesome to me was that my seven-year-old son saw this video, understood the significance, remembered the scientific name of a protien molecule, remembered the name of the preacher, and thought about it days later and wanted to share it with me! I truly believe God is preparing Foster for a wonderful future, he has a heart and understanding of the things of God beyond his years.

I hope you are encouraged by Mr. Giglio's words as much as Foster and I were!



Louie Giglio - Laminin

On a Scrap Related Note... GASC time!

I can't believe it's almost June! But I am excited because June means it's time for the Great American Scrapbook Convention held annually at the Arlington Convention Center. This year the show runs June 5-7 and if you are a scrapbooker but have never attended, it really is worth it! This year I am really looking forward to GASC for another reason - it marks my return to the teaching circuit after taking close to a year off due to Ella's arrival. I have missed teaching and the scrapbook community greatly! I would love to see some of y'all in my classes, too! Here's the Rusty Pickle line-up for GASC 2008:

Princess Layout

Jumbo Cards

Love, Love, Love Mini Album

All Boy Layout

Happy Mother's Day

It's Mother's Day! I cherish motherhood. It sounds cliche but it is the hardest job I have every done but also the most rewarding by far. All those things you hear people say before you become a parent take on new meaning when you start experiencing them yourself.

I am settling in to my new place here in Holland. (If you haven't ever read the story "Welcome to Holland" written by the mother of a child with special needs, you should google it. It is another one of those things that take on new meaning when you experience it for yourself.) I am beginning to feel like audi appointments, hearing aid fittings, special educational meetings and other doctors appointments are just a routine part of life. Honestly, it's not so bad. I do know there are many parents facing much scarier, more dibilitating diagnosis with their children. My heart goes out to them. It reminds me of the photograph of my own parents with my older brother just a few weeks before his 3rd birthday. When I was a child, I never understood the strange look of forced smiles on my parents' faces as my brother smiled happily standing between them in short pants and knee sock (which to this day, he blames for ruining his life! So I guess Mom wasn't completely perfect, but he did look cute!). When I became a parent myself and understood the context of the photograph, I was amazed that my parents were able to smile at all; you see, the picture was taken on the eve of my brother's heart surgery. Since I was 6 years younger, I only knew of that time from stories of how my brother gave the nurses a fit in the hospital and his scar running around his chest. My mother never talked about how scared she must have been, but after becoming a mother myself and looking into her eyes in that photograph, the eyes of a young mother about to hand over her tiny only child into the hands of a heart surgeron, she never had to explain.

After doing much research and finding 'professional' after 'professional' recommend things like 'language-rich environments' and programs that stress important sounding ideas such as 'language models' and focus on 'vocabulary enrichment activites', 'narrating daily activities' and more. Then reading the descriptions of intentional activities designed to help HOH kids develop language, I realized, "These are things my mother does with my children naturally. Isn't this how kids are supposed to be raised?" I had told my mom one time, even before we found out about the girls' hearing loss, that if she could bottle and sell her style of child care, she could make a fortune! My brother and I were both early readers; I was a regular Reader's Digest fan before I even started school. So was Foster; at the end of kindergarten he tested as reading on a 5th grade reading level and has always been well advanced in language acquisition, both receptive and expressive. I credit most of that to the way my mother cares for him. I hesitate to say 'teach' because I don't want you to think it is a set aside time of planned activity. She just naturally realtes to her grandchildren so that they learn language in everything they do. And beyond that, she does it in ways that they think are fun! The 'narration of daily activities' is something that was always a part of my life and now my children's lives as well. Her imaginative stories are so good that for years I have been encouraging her to write children's books. I always thought it was my mom and her silly stories and fun chatter; who would have thunk...? Here's a tip though: if you ever pass a cemetary with my mom and there is an elderly man sitting in a lawn chair, make a quick comment about the weather or the pature on the other side of the road, anything really, trust me on this one! But seriously, I believe that the reason Faith is doing so well inspite of her hearing loss is that she has been immersed in a sort of informal verbal therapy since she was born, without us even realizing it! All thanks to my mom!

Mom, I can not begin to thank you enough for the gifts you have given my children - especially the gift of language! You have helped me be a better mom, too! Thank you for all you do!

HAPPY MOTHER'S DAY!!

About That Storm

Well, I mentioned in my earlier post about the storms I have been weathering. Here's the deal. Last summer, I was having suspicions that Faith was having trouble hearing. No one else saw it and basically made me feel like I was being paranoid because of my own loss. I even took her to the pediatrician specifically for a hearing screening. They said she did fine at first then "lost interest" but they were sure there was nothing to worry about. It didn't help because I kept seeing things that I thought were not quite right and I kept worrying. Mothers know these things. In February, we had her annual check up and I was determined to get a referral for a hearing evaluation. The ped. beat me to the subject when he recommended speech therapy. I told him I really thought the problem was with her hearing and was showing in her speech so he referred us to the Callier Center.

A week later we were at Callier, an absolutely precious audiologist worked with Faith through a battery of tests: tympanogram (how the ear drum responds)-normal, OAE-refer (sounds emitted back from the ear, refer means it wasn't normal), then a sound booth test using play resonse with another audiologist. Even though I thought Faith had a problem, I was stunned as I saw the pattern developing on the audiogram throughout the testing. Faith has bilateral hearing loss, meaning both ears are affected. She started near normal (20 dB) with lower frequencies then plummeted to 55-80 dB above 1500 Hz. Well over half of her hearing range is in the levels moderate or severe loss. I felt like someone had punched me in the gut. This was much more devastating to me than learning of my own hearing loss. In a whirlwind, the audiologist was talking about hearing aids, ear mold choices and all kinds of things I just wasn't ready to hear. We left with impressions already made for ear molds and an appointment for her to come back to be fitted with loaner aids until I could wade through insurance stuff. The precious audiologists recommended testing Ella as well, so we set an appointment for her too.

In the time between our visits to Callier Center, Faith saw my ENT. He ordered a whole slew of tests to rule out different syndromes and causes: CT, EKG, US, blood work, other lab work... lots of stuff that is just all around scary for a 4 year old! I was a nervous wreck and Faith got to where she was asking each night, "Do I have a 'pointmen 'morrow?" We even had to do the CT twice, the first time we tried it, Faith just freaked out because they tried to strap her to the table. I don't blame her one bit, it's scary, but since she couldn't move at all or the test would be useless, they had us come back and put her under sedation. Talk about a stressed out Mommy - I HATE having to sedate my kiddos for anything!

I do have to share a quick story about the EKG. When the tech was hooking up all the leads, she was explaining to Faith that she was going to measure the electricity in her heart. She asked Faith, "Do you know you have electricity in your heart?" Faith got a very doubtful look on her face and said, "Nooooo, I have God in my heart!" Out of the mouths of babes!

If there was a turning point for me in this journey, it was our second visit to Callier Center. The day Faith got her loaner aids. Her face absolutely lit up and she was so excited she could hear! She kept naming all the things she could hear, like the people talking in the hall. Everyday normal sounds were amazing to her! I remember how she felt, hearing my car blinker or my computer keyboard after getting my own hearing aids, only hers was different because she most likely has NEVER heard these things. Words cannot describe her pure joy in hearing, something so many people take for granted. I know I did before my own hearing loss.

As wonderful as that moment was, it was short lived as I joined audiologists working with Ella in another room. My mother had been with them, but they weren't having much luck getting Ella to cooperate so we traded kids. I was able to get her to quite down and take interest in the booth test but as it went on, my heart began to sink. There were frequencies she definitely wasn't responding to. The OAE was similar to Faith's-refer. After the tests, the audiologist delivered the news I already feared. Her hearing was apparently well below normal, in a pattern similar to Faith's (and mine). Because of her age, she wanted to order an ABR, which measures brain response, to confirm the results. I now have two daughters facing life with hearing loss.

It didn't take long to type out the update but it seems like it has taken forever to get here in real life! LOL! And we still have a ways to go. Tomorrow is our follow-up with the ENT to hopefully get some answers from all those tests. We have an appointment next week with a closer audiologist to talk about ordering Faith's permament aids. Ella has her ABR scheduled and her first appointment with the ENT, which I am thinking will probably be followed by a battery of tests like Faith. We have also already started the process to get services through the school district.

One of the first questions others have asked is, "What about Foster?" We did have his checked to be safe and get a base line normal for future comparison. He tested pefectly normal, although he did explain to the audiologist that he already suffered from male-selective-hearing when asked by his mother to do things he really didn't want to do. That kid!

Thank you so much for all the prayers! I know without a doubt that prayer is one thing that has sustained me over the last few weeks. I know God is in control. The verse we chose for Ella's baby dedication reminds me of that:
8 "For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. 9 "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. Isaiah 55:8-9

Girls Just Want 2 Have Fun

Here's that layout I promised. Just a fun page of an afternoon hanging out at the park. Paper is from Fancy Pants and Ki Memories: Love, Elsie; Pink glitter chipboard - Doodlebug; Felt Flower - Prima, and QuicKutz Merry Alpha.

Have a great Sunday!

I am a Bad Blogger!

Okay, so it has been forever since I posted anything to my blog. Most of the time I feel like there is nothing that interesting going on in our lives that need to be blogged about. Then when something does happen, it usually has be so busy or over whelmed that I just don't have the time or motivation to blog. Talk about a Catch 22! LOL!

Well, in the midst of our current struggles, I have been feeling quite overwhelmed, to say the least. It is so comforting to me though how the Lord always finds a way to deliver a message that I really need to hear in a perfect way. Sitting in our MOPS meeting, feeling the world crashing around me, watching all the other pre-school moms with their perfect little children, talk about their perfect little husbands in their perfect little world (well, not really, I know they have their share of problems too, but sometimes it just seems that way), not really listening to the speaker, until she mentions Peter. Peter was in a boat in a storm, and when he saw Jesus, out in the waves walking on the water, he wanted to be with his Lord. He cried out to Jesus, asking to come to Him. It's like Peter knew he would be better off on the raging waves with Jesus than in the boat without Him! So Jesus called and Peter stepped out of the boat. Now this is the part of the story where I can really identify with Peter. Once he was out of the boat, Peter realized the fury of the storm around him; he took his eyes off Jesus and focused on the problems instead. And that's when things went south, Peter started sinking; and that's what I had been doing - watching the storm and sinking in my troubles instead of looking to Jesus.

Well, I would like to say I have learned my lesson and since that day I have been resting in the joy of the Lord without worry. But I can't say that truthfully. I can say I am doing better, but I still have to remind myself to turn things over to Him daily (hourly, minutely... is that even a word? "minutely"?). :)

I have even got a got of my creative mojo back and scrapped a page, the first in quite a while. Maybe I can get it posted later for y'all to see.