There is no doubt in my mind; I have climbed my new life's learning curve with a solid view. This has been a nourishing year for our family. We have soaked in the offering of those around us as to help us continue to cope and grow as a family. IFSP meetings have become family gatherings, gymnastics class a cinch, therapy as needed, communication with scheduling has improved, sharing responsibility improved, and the girls are happy and healthy.
I'm excited to reflect on my goals for 2013:
1. Run the Shamrock Shuffle in Downtown Chicago.
This was my favorite race of the year! The energy you get from running on the streets of Chicago and the support of onlookers is like nothing else! I can't wait to run it in 2014!
2. Develop my photography skills.
Huge win! I took a basic skills class, several mentoring classes, purchased a new lens, shot my first family sitting, created a facebook group for mommy photographers and just signed up for a year-long shoot along to create my portfolio.
3. Read more!
Including audiobooks, I read 17 books this year, which is almost double the number from 2012.
4. Improve my writing skills.
Meh.
5. Continue to grow as a teacher.
Definitely! I am pretty well versed in the eight math practices related to common core and my communication with students and parents has become more fluid.
Better than I thought! Here's my new set for 2014
1. Crossfit!
2. Exercise impulse control with eating. This is going to suck and you may be hearing a LOT of whining from me, but I'll use this as an outlet.
3. Build a portfolio for a potential photography gig.
Cheers to a happy and healthy 2014!
Monday, December 30, 2013
Wednesday, October 2, 2013
The Chromosome 18 Registry and Research Society
I'm inspired to share with you tidbits of The Chromosome 18 Registry and Research Society.
Some of the affected individuals have significant medical needs. The story is unfortunately all too uncommon: insurance decides to DROP said individual from coverage because they require "too many surgeries". What do our members do? Create a FB page to collect donations for the family!
Another affected child needs surgery on a few issues. Many of us know the feeling of the anticipation of surgery so of course, we flood as much virtual support to this family as possible!
Here's a big one: Annual conferences are held in a different city each year, with the registry's hometown of San Antonio hosting every 4th year. You are probably wondering who coordinates the conferences? The answer is volunteers and Board Members! To give you a sense of the enormity of this task, I've been told that it is much like planning a wedding. Planning for a given city begins 2.5 years out!
Let's also mention the tireless efforts of those who hold fundraisers in honor of the registry! Some of the larger fundraisers take months to plan, but raise thousands of dollars for the registry!
The registry's "office" is actually the basement of our founder and President, Dr. Jannine Cody. She along with two other staff members and Board Members, lead the registry. 97% of monies raised are spent on educational and research programs.
If you have a moment, I'd love for you to explore the registry's website to learn more: www.chromosome18.org. Or, if you want, post a question and I'll do my best to answer!
Some of the affected individuals have significant medical needs. The story is unfortunately all too uncommon: insurance decides to DROP said individual from coverage because they require "too many surgeries". What do our members do? Create a FB page to collect donations for the family!
Another affected child needs surgery on a few issues. Many of us know the feeling of the anticipation of surgery so of course, we flood as much virtual support to this family as possible!
Here's a big one: Annual conferences are held in a different city each year, with the registry's hometown of San Antonio hosting every 4th year. You are probably wondering who coordinates the conferences? The answer is volunteers and Board Members! To give you a sense of the enormity of this task, I've been told that it is much like planning a wedding. Planning for a given city begins 2.5 years out!
Let's also mention the tireless efforts of those who hold fundraisers in honor of the registry! Some of the larger fundraisers take months to plan, but raise thousands of dollars for the registry!
The registry's "office" is actually the basement of our founder and President, Dr. Jannine Cody. She along with two other staff members and Board Members, lead the registry. 97% of monies raised are spent on educational and research programs.
If you have a moment, I'd love for you to explore the registry's website to learn more: www.chromosome18.org. Or, if you want, post a question and I'll do my best to answer!
Sunday, September 29, 2013
Keep on Truckin
Last week was Homecoming Spirit Week at LHS. I have a love/hate relationship with this week; on one hand, it's fun to dress up and promote activities, on the other hand, our kids usually get a little off-the wall. This year's spirit events and homecoming court proved different. Thursday morning first hour kicked off our spirit assembly games. Each grade competes with each other until a champ in each of 6 or so games is called. I head up to the weight room during this time to assist with our students who can't handle the sensory overload of being in a gym with 1500+ people... With that in mind, we have a great overall view and what I witnessed was the best sportsmanship and overall behavior of all time! We were given a "heads up" a few days before spirit week, that a few of our students may be on the HC court. Knowing this ahead of time was crucial in getting a game plan in action to prepare these students for the limelight. Turns out, there was a least one winner in every grade who had a significant disability! While I realize we are not the first high school to do something like this, it is a reflection of the student body's priorities.
I find myself diving into photography more and more as time goes on. I love it as a hobby and appreciate those who photograph for a living! The competition is fierce and you need to have background and talent in many areas to be successful. That being said, I am trying to focus on learning more about how to navigate my DSLR and how to create the best photographs of people. I am signed up for a mentoring session with Amy Tripple at the end of October to get a direction of how to reach the latter goal. I'm also starting to build a simple "prop box" for family photos. One of my friend's requested that I take pictures of her and the family for their Christmas Cards! I'm excited to have my first official "session" with a great family.
I came across a post from one of my 18q parents that spoke about not treating those who are affected and there family's as victims. Though we have to navigate a different road than most, each child's road is going to vary regardless of ability. This ties in with continuing to live our lives with goals and hopes and dreams with the understanding of what Adele can and will potentially bring to the table. My aunt put it best when she said "Kelly, they're going to break your heart one way or another". Hard times happen to all who choose to get into this crazy world called parenting!
On that note, time to write some "hopes and dreams" for other students and edit some photos from this weekend.
I find myself diving into photography more and more as time goes on. I love it as a hobby and appreciate those who photograph for a living! The competition is fierce and you need to have background and talent in many areas to be successful. That being said, I am trying to focus on learning more about how to navigate my DSLR and how to create the best photographs of people. I am signed up for a mentoring session with Amy Tripple at the end of October to get a direction of how to reach the latter goal. I'm also starting to build a simple "prop box" for family photos. One of my friend's requested that I take pictures of her and the family for their Christmas Cards! I'm excited to have my first official "session" with a great family.
I came across a post from one of my 18q parents that spoke about not treating those who are affected and there family's as victims. Though we have to navigate a different road than most, each child's road is going to vary regardless of ability. This ties in with continuing to live our lives with goals and hopes and dreams with the understanding of what Adele can and will potentially bring to the table. My aunt put it best when she said "Kelly, they're going to break your heart one way or another". Hard times happen to all who choose to get into this crazy world called parenting!
On that note, time to write some "hopes and dreams" for other students and edit some photos from this weekend.
Monday, September 2, 2013
Lean In
Friday night started my outstanding Labor Day Weekend! I took the opportunity to visit a friend who recently purchased a lovely new home. She happened to reference one of our favorite reads of late: "Lean In". I was reminded that leaning in should be done across many facets of our lives.
Saturday's version of leaning in came through the completion of my first obstacle run. This was a 7k which included 27 obstacles, of which I completed 24 with the help and support of my co-worker and friend who stuck with me the entire time through! Not to mention my husband and other friends waiting for us at the finish line!
Sunday morning, James, the girls, my friend and I went to Frankfort Fest with our friends who live right off the trail that leads to the fest. We walked on a paved trail that lead to Downtown Frankfort where we were met with artisan crafters, carnival rides, music and food. The girls went with James and his friend to the carnival while my friends and I wasted no time visiting as many artisan tents as possible! I picked up several great items including a few personalized ornaments, personalized ballet bag for Jade, metal signs for my classroom and home and of course, a cute teaching necklace! We met up with the boys after an hour and half to pick up the girls while they made there way to the beer tent. Of course, we needed to stop for gelato before we headed back to the house! I was so appreciative of my friends helping to take care of our girls. They took turns holding Jade and pushing Adele in the stroller. These ladies hold a special place in my heart because they are fellow Special Education Teachers who speak my language and always feel like home!
After an awesome afternoon, we scurried to get the girls ready for an overnight visit with grandma and grandpa so James and I could get the house ready for a Labor Day soiree with my Neptune East Family! We provided the beef, beer, wine and a few appetizers while everyone else brought a dish. Our first game of the evening was a politically incorrect version of Apples to Apples which had me laughing so hard I cried! We took a 10 minute break and moved onto Catch Phrase, which I haven't played in years but still manages to be a crowd favorite! It always warms my heart to reunite with this family because I can say without a doubt, they provided the meaning of true friendship and partners in the best years of my life!
Today was a family centered day that started with breakfast with James down the street from where we had our first apartment together. We picked up the girls from EP and headed over to The Arboretum for lunch and a hike. Jade impressed me with her map reading abilities and new found love for bugs! Adele took 20 steps on her own on the trail and was walking with me and James holding one hand! I love that Adele is now leading us to where she wants to go, not to mention that she will be full out chasing her sister in NO time! This evening, I promised Jade that we would bake muffins together. She was able to tell me how many eggs we needed and counted out how many muffin tins were needed. I have noticed huge growth in her academic abilities since she started going to preschool two weeks ago. I am confident that our babysitter set the stage for such huge growth! She traces letters on signs without prompting and can identify 3 out 5 given letters (yes, I just slipped into goal writing.... good lord!!!) Her enthusiasm warms my heart and I love hearing about new friends at school!
Leaning in and giving others the opportunity to lean in is what life is all about for me these days.
Saturday's version of leaning in came through the completion of my first obstacle run. This was a 7k which included 27 obstacles, of which I completed 24 with the help and support of my co-worker and friend who stuck with me the entire time through! Not to mention my husband and other friends waiting for us at the finish line!
Sunday morning, James, the girls, my friend and I went to Frankfort Fest with our friends who live right off the trail that leads to the fest. We walked on a paved trail that lead to Downtown Frankfort where we were met with artisan crafters, carnival rides, music and food. The girls went with James and his friend to the carnival while my friends and I wasted no time visiting as many artisan tents as possible! I picked up several great items including a few personalized ornaments, personalized ballet bag for Jade, metal signs for my classroom and home and of course, a cute teaching necklace! We met up with the boys after an hour and half to pick up the girls while they made there way to the beer tent. Of course, we needed to stop for gelato before we headed back to the house! I was so appreciative of my friends helping to take care of our girls. They took turns holding Jade and pushing Adele in the stroller. These ladies hold a special place in my heart because they are fellow Special Education Teachers who speak my language and always feel like home!
After an awesome afternoon, we scurried to get the girls ready for an overnight visit with grandma and grandpa so James and I could get the house ready for a Labor Day soiree with my Neptune East Family! We provided the beef, beer, wine and a few appetizers while everyone else brought a dish. Our first game of the evening was a politically incorrect version of Apples to Apples which had me laughing so hard I cried! We took a 10 minute break and moved onto Catch Phrase, which I haven't played in years but still manages to be a crowd favorite! It always warms my heart to reunite with this family because I can say without a doubt, they provided the meaning of true friendship and partners in the best years of my life!
Today was a family centered day that started with breakfast with James down the street from where we had our first apartment together. We picked up the girls from EP and headed over to The Arboretum for lunch and a hike. Jade impressed me with her map reading abilities and new found love for bugs! Adele took 20 steps on her own on the trail and was walking with me and James holding one hand! I love that Adele is now leading us to where she wants to go, not to mention that she will be full out chasing her sister in NO time! This evening, I promised Jade that we would bake muffins together. She was able to tell me how many eggs we needed and counted out how many muffin tins were needed. I have noticed huge growth in her academic abilities since she started going to preschool two weeks ago. I am confident that our babysitter set the stage for such huge growth! She traces letters on signs without prompting and can identify 3 out 5 given letters (yes, I just slipped into goal writing.... good lord!!!) Her enthusiasm warms my heart and I love hearing about new friends at school!
Leaning in and giving others the opportunity to lean in is what life is all about for me these days.
Wednesday, August 14, 2013
What it Takes
The beginning of every school year brings reflection and determination. I am entering my second year of teaching having two kids. Last year was a whirlwind of emotions and commitments made outside work to serve my family and my sanity. This year I get to relish in a bit more stability and experience with how to orchestrate our three ring circus.
A couple of simple guidelines to strive for this school year: turn on my phone twice during the school day to check for messages, get one-to-one conversations going more often with my students and commit to limiting my weeknight commitments.
This morning I was thrilled when 8 of my Freshmen from last year came by to visit me in the morning before they started there day as Sophomores. One of my favorite things about walking the hallways from my classroom to the math wing for my co-taught class, is getting an opportunity to run into smiling students from years past. I love seeing them grow-up year after year and keeping in touch with them throughout there time at LHS and after!
You see a great majority of us are always striving for better ways to do x,y & z in our classrooms, this goes without saying. I'll tell you, just when you start to doubt that your not doing enough to make a difference, your reminded how much of a difference you do make.
A couple of simple guidelines to strive for this school year: turn on my phone twice during the school day to check for messages, get one-to-one conversations going more often with my students and commit to limiting my weeknight commitments.
This morning I was thrilled when 8 of my Freshmen from last year came by to visit me in the morning before they started there day as Sophomores. One of my favorite things about walking the hallways from my classroom to the math wing for my co-taught class, is getting an opportunity to run into smiling students from years past. I love seeing them grow-up year after year and keeping in touch with them throughout there time at LHS and after!
You see a great majority of us are always striving for better ways to do x,y & z in our classrooms, this goes without saying. I'll tell you, just when you start to doubt that your not doing enough to make a difference, your reminded how much of a difference you do make.
Tuesday, August 6, 2013
18: Post Conference Thoughts
No big surprise that last week was exactly what the doctor ordered! We met fantastic families, affected individuals and Registry leaders.
The minute I walked into our first workshop, I could feel a weight lift off my chest. I knew then and there that we belonged. During lunch the first day, I spotted a mom of an affected child with a beautiful 18 tattoo on her wrist. I went over to her table and introduced myself, as I could tell from her badge this was also her first conference. I met another lovely mother with an affected daughter that comes from a family of educators. During mom's night out, one of the post poignant conversations was had when myself and a mom talked about our daughter's having old souls. We believe that our girls have wisdom way beyond there years and teach us an immeasurable amount about life.
Two veteran members from the Midwest who have children with 18q- introduced themselves to James and I. I had the pleasure of meeting there families and discovered that one of the member's daughters teaches at a nearby high school! These ladies are quickly becoming reliable resources and rocks to lean on.
Wednesday night's dinner dance was an opportunity to catch up with folks that we didn't have a chance to meet with throughout the previous days. One of the most beautiful moments came in the form of affected adults welcoming Adele to the family. We owe it to Adele to continuously seek guidance and support from her affected family; after all, this is a part of her identity.
Our family and friends in Jacksonville proved once again to be amazing! We spent Sunday at the beach for some time with our good friends that we miss dearly. My cousin lent us her mini-van (thanks Marv the mini), for the entire week along with picking up and dropping us off at the airport and watched the girls for us on Monday and Tuesday!
Savannah itself is a stunning city with gorgeous buildings and landscaping along with delicious food and drink. Shopping is a breeze and we must have walked 6 miles a day with no second thought. I was a big fan of how the city is structured. It is similar to Chicago in the sense that everything radiates from the water into a grid pattern. This made navigating a breeze!
James also had a chance to interact and connect with some amazing dads as well. These men offered him advice and glimpse into the future.
We are planning on attending as many conferences as possible. Next year we'll be heading to Stamford Connecticut to reconnect with our new family.
Saturday, July 27, 2013
Georgia on my Mind
The night before traveling on an airplane for a flight set to take off at 6:00 am from O'Hare to Jacksonville FL with two kids under the age of three.....Yeah, me too!
In terms of logistics, my hope is that Murphy's Law is kind to us tomorrow. Weather is looking good on both ends and flight stats are positive. We are as packed as we are going to be and would like to give a special shout-out to my dad for volunteering to drive us to the airport at 4:00 am! We have packed "new toys" for the girls and a DVD for Jade. I'm crossing my fingers that Adele is willing to sleep on the airplane.
I need to give another huge thanks to my cousin, her wife and my "niece" for lending us there mini-van and helping us watch the girls in Savannah! We are looking forward to visiting with them in Savannah and our friends who recently moved to Jacksonville!
In terms of logistics, my hope is that Murphy's Law is kind to us tomorrow. Weather is looking good on both ends and flight stats are positive. We are as packed as we are going to be and would like to give a special shout-out to my dad for volunteering to drive us to the airport at 4:00 am! We have packed "new toys" for the girls and a DVD for Jade. I'm crossing my fingers that Adele is willing to sleep on the airplane.
I need to give another huge thanks to my cousin, her wife and my "niece" for lending us there mini-van and helping us watch the girls in Savannah! We are looking forward to visiting with them in Savannah and our friends who recently moved to Jacksonville!
Tuesday, July 9, 2013
Hi! Nice to see you again!
Summer has been a wonderful mix of family time, playdates, work and a little vacation time. I can hardly comprehend starting up again one month from today.
Last week marked one year since we received the phone call from Dr. McCall telling us about Adele's diagnosis. Last summer was hands down the most difficult time in my life. Since then, Adele has become Adele, which has helped to overshadow the syndrome and put the girl up front. I am continually amazed at her personality. She lights a room up with her smile and is destine to be a performer of some sort. Best of all, she is happy and overall very healthy. We have obstacles to tackle but a strong team of people who we now consider our family, to help us overcome them.
Speaking of Adele, I know many of you have inquired about when we plan to reschedule "A Day for Adele". I am so happy that word has gotten out and quite frankly, it helps motivate me to move forward with the fundraiser. We are headed to Georgia in just a few weeks, so after that, we'll focus on picking another date. My best guess right now is late April, or early May of 2014.
This summer, I have been working as Summer School Coordinator at Lemont. I have been happy with the position; faced a few challenges and showed off my strengths. This position is sneak preview of future endeavors and has helped me grow as a teacher and hopeful future administrator.
Jade continues to rock as our "big girl". She loves her "big girl" gymnastics class and is conquering her fear of water. The other day, we went to my Aunt's pool. Jade was hesitant as usual, however, by the time she got out of the water, she was ready to dunk her head under! A big statement for this girl. She is quickly developing a stronger sense of self over the past year. Along with this, her confidence levels are going up which is something I was keeping an eye on. I'll have to make sure to post a video of one of her vocal performances soon as well.
James has almost conquered his first trimester of grad school! He has weekly online class sessions in the evening along with group sessions, in-person class sessions twice a trimester and projects. This has put a time constraint on us as a family, but he's juggling the life balance well. I am happy to support him in this effort!
Last week marked one year since we received the phone call from Dr. McCall telling us about Adele's diagnosis. Last summer was hands down the most difficult time in my life. Since then, Adele has become Adele, which has helped to overshadow the syndrome and put the girl up front. I am continually amazed at her personality. She lights a room up with her smile and is destine to be a performer of some sort. Best of all, she is happy and overall very healthy. We have obstacles to tackle but a strong team of people who we now consider our family, to help us overcome them.
Speaking of Adele, I know many of you have inquired about when we plan to reschedule "A Day for Adele". I am so happy that word has gotten out and quite frankly, it helps motivate me to move forward with the fundraiser. We are headed to Georgia in just a few weeks, so after that, we'll focus on picking another date. My best guess right now is late April, or early May of 2014.
This summer, I have been working as Summer School Coordinator at Lemont. I have been happy with the position; faced a few challenges and showed off my strengths. This position is sneak preview of future endeavors and has helped me grow as a teacher and hopeful future administrator.
Jade continues to rock as our "big girl". She loves her "big girl" gymnastics class and is conquering her fear of water. The other day, we went to my Aunt's pool. Jade was hesitant as usual, however, by the time she got out of the water, she was ready to dunk her head under! A big statement for this girl. She is quickly developing a stronger sense of self over the past year. Along with this, her confidence levels are going up which is something I was keeping an eye on. I'll have to make sure to post a video of one of her vocal performances soon as well.
James has almost conquered his first trimester of grad school! He has weekly online class sessions in the evening along with group sessions, in-person class sessions twice a trimester and projects. This has put a time constraint on us as a family, but he's juggling the life balance well. I am happy to support him in this effort!
Thursday, May 30, 2013
I'm kind of a big deal...
Welcome summer and welcome routine doctor appointments, therapy sessions and re-evals! This is part of life and I have learned to embrace it as best as I can, luckily, Adele has absolutely NO trouble gaining fans everywhere she goes.
Today we had an Opthamologist appointment. This is the same waiting area as our ENT, so we are no stranger to this office building. Part of the time, Adele had her BAHA on. We had a lovely group of 7-10 year old sisters very politely ask "what is that head band for?". My standard response to this question when children ask is "it helps her hear better". Of course, Adele flashes the girls one of her HUGE smiles and starts waving and clapping so she immediately makes BFFs. We get called back to the office and since they needed to dilate her eyes, we got to go back to the waiting area to make more friends. Here we encountered a 2 year old blonde boy who was smitten with Adele. While attempting to hug her, he also got a smooch in! Who would have thought a first kiss would be in a waiting area of the Opthamologist's office?
Yesterday, Adele saw her friend Mindy, the Audiologist. Mindy did a behavioral hearing test which consists of Adele and I going into a sound booth, Adele distracted in a high chair playing with foam puzzle pieces, while I sit nearby for comfort. There is a window in front of the booth so Mindy could make visual contact with Adele. Mindy proceeded to talk to Adele through a microphone system and reward her by flashing Sponge Bob on one side and Crabby Patty on the other. Adele did very well for her age and we found that her hearing WITHOUT the BAHA has stayed the same. WITH the BAHA, she was able to get up to normal range in her right ear!!! (Note that Adele has borderline normal hearing in her left ear). So, how does this impact her speech? Essentially, it shouldn't, so any Speech Delay relates to other things such as her mouth muscles etc... Our Speech Therapist is evaluating her on Tuesday, so we'll hear more at that time. Of course, as we talked, Adele managed to convince Mindy that she was the cutest toddler on the planet with plenty of smiles and communication! I should mention that Adele has been gaining speech, but at a slower pace than her average peers.
Good news: Adele has AWESOME eyes. Optic nerves look normal and she no longer has a Nystagmus (twitching of the eyes). We only have to see her once a year!! Physical Therapist is reducing to once a month since she is monitoring Adele and Developmental Hearing and Speech will continue. Adele's 6 month annual review is coming up in a week and a half so we'll get more details at the meeting.
Love my 18qt! Time to pick up our big sister!
Today we had an Opthamologist appointment. This is the same waiting area as our ENT, so we are no stranger to this office building. Part of the time, Adele had her BAHA on. We had a lovely group of 7-10 year old sisters very politely ask "what is that head band for?". My standard response to this question when children ask is "it helps her hear better". Of course, Adele flashes the girls one of her HUGE smiles and starts waving and clapping so she immediately makes BFFs. We get called back to the office and since they needed to dilate her eyes, we got to go back to the waiting area to make more friends. Here we encountered a 2 year old blonde boy who was smitten with Adele. While attempting to hug her, he also got a smooch in! Who would have thought a first kiss would be in a waiting area of the Opthamologist's office?
Yesterday, Adele saw her friend Mindy, the Audiologist. Mindy did a behavioral hearing test which consists of Adele and I going into a sound booth, Adele distracted in a high chair playing with foam puzzle pieces, while I sit nearby for comfort. There is a window in front of the booth so Mindy could make visual contact with Adele. Mindy proceeded to talk to Adele through a microphone system and reward her by flashing Sponge Bob on one side and Crabby Patty on the other. Adele did very well for her age and we found that her hearing WITHOUT the BAHA has stayed the same. WITH the BAHA, she was able to get up to normal range in her right ear!!! (Note that Adele has borderline normal hearing in her left ear). So, how does this impact her speech? Essentially, it shouldn't, so any Speech Delay relates to other things such as her mouth muscles etc... Our Speech Therapist is evaluating her on Tuesday, so we'll hear more at that time. Of course, as we talked, Adele managed to convince Mindy that she was the cutest toddler on the planet with plenty of smiles and communication! I should mention that Adele has been gaining speech, but at a slower pace than her average peers.
Good news: Adele has AWESOME eyes. Optic nerves look normal and she no longer has a Nystagmus (twitching of the eyes). We only have to see her once a year!! Physical Therapist is reducing to once a month since she is monitoring Adele and Developmental Hearing and Speech will continue. Adele's 6 month annual review is coming up in a week and a half so we'll get more details at the meeting.
Love my 18qt! Time to pick up our big sister!
Friday, May 24, 2013
Honored
I came to realize the class of 2013 is monumental for me for a few reasons. First, I started co-teaching in 2009-2010 so these kiddos and I were Freshmen. Also, this class got to see me through my pregnancy with Jade, therefore, the first group to see me in a completely different role in my life.
Both experiences have made me see my students in the bigger picture of life. I was THRILLED to co-teach because I began to realize that I could make an impact on even more students. It has been refreshing to work with my gen. ed. students because they are ever so grateful for the amount of one-to-one time they get from me and because it gives me an opportunity to find and assist those who have been struggling silently for years.
Days like these fill my cup! It's been an honor, Class of 2013!
Both experiences have made me see my students in the bigger picture of life. I was THRILLED to co-teach because I began to realize that I could make an impact on even more students. It has been refreshing to work with my gen. ed. students because they are ever so grateful for the amount of one-to-one time they get from me and because it gives me an opportunity to find and assist those who have been struggling silently for years.
I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."
- Maya Angelou
Days like these fill my cup! It's been an honor, Class of 2013!
Sunday, May 19, 2013
Tidbits from the Weekend
Saturday morning I got to spend two hours to myself with sweet baby girl before big sissy woke up.
Later that day, Jade wanted to take Adele for a ride in the wagon
Grandma & grandpa took the girls for a night. Love this picture!
Mommy got to enjoy a flight of Chardonnays/Cabs with a great friend
Quite a gem of a neighborhood & a beautiful home that my parents look forward to remodeling before they make the final move!
Jade & I managed to eeek out some gardening today. This is the result of phase one of three.
I decided to do myself a favor & base my flowers on the discriminating taste buds of rabbits. We ended up with geraniums for the first time. Phase two includes adding another box plant to the porch. Phase three includes some baskets of herbs on our privacy wall & a few new perennials.
Jade did a great job of helping me this year! She was able to remove the flowers from the cups, dig a hole and hose off the flowers & mommy! Dirty girl before her bath
Time to wrap up my day with a little "Dark Places".
Thursday, May 9, 2013
I Run My Own Race
As much as inspirational quotes get old, I still can't help but to post a few that really speak to me. I found this one about 2 minutes ago:
Seems like I run my own race often these days, literally and figuratively. Saturday, I have a trail run 5k which should prove to be a lovely place to run as long as I don't get to caught up in the mud since it's supposed to rain the next few days.
James & I had an excellent "Come to Jesus" meeting regarding a timeline to purchase a home. We are committing to ONE savings account. Yes I know many of you just passed out, so I'll give you a minute...... Our goal is to put our town house up for sale around February of 2016, then hope to buy sometime over the summer. For the record, assuming we both work in our current locations, we will not be moving any further west or south, other than that, we have no idea where we will actually end up. This gives us three years to build up our liquid assets (I'm making Suze proud!) Just the notion of a structured plan motivates me to stay-the-course.
We also discussed the need to move "A Day for Adele" to October. We will use the summer to continue organizing and we'll use our experience in Savannah to better communicate and educate our Army.
Monday, April 29, 2013
Permanence
Adele's big 1st birthday was this weekend. It's been a mixed bag of emotions for me.
Something that I've come to terms with recently, is that up until Adele's diagnosis, anytime a conflict or difficult situation has come up in my life, it has resolved. In the case of Adele's needs, they will not.
It is a constant struggle for my brain to wrap itself around permanence. Through my best efforts within my time and space, I have not been able to get myself to a place of balance. I am setting myself up with a very local therapist in hopes that I can come up with some effective coping mechanisms.
I am asking my audience a favor as a whole, with the understanding that many of you do this already..... Please check in with me from time to time on how I'm doing. I don't always have the forethought to express my need for help. Also, I am doing the best I can with my girls and thank goodness, I have a kick-ass husband as co-pilot.
On a side note, I took a million birthday pictures of my babe on her birthday, and will share them soon.
Something that I've come to terms with recently, is that up until Adele's diagnosis, anytime a conflict or difficult situation has come up in my life, it has resolved. In the case of Adele's needs, they will not.
It is a constant struggle for my brain to wrap itself around permanence. Through my best efforts within my time and space, I have not been able to get myself to a place of balance. I am setting myself up with a very local therapist in hopes that I can come up with some effective coping mechanisms.
I am asking my audience a favor as a whole, with the understanding that many of you do this already..... Please check in with me from time to time on how I'm doing. I don't always have the forethought to express my need for help. Also, I am doing the best I can with my girls and thank goodness, I have a kick-ass husband as co-pilot.
On a side note, I took a million birthday pictures of my babe on her birthday, and will share them soon.
Tuesday, April 16, 2013
Reflection
In honor of those affected by The Boston Marathon, I wanted to share a few photos and highlights from The Shamrock Shuffle and challenge myself to a new goal.
The day started out at 4:45 A.M. on Sunday. Lucky for me, but not so much for my hardworking dad, I was able to grab a ride from him to McCormick Place since he was on his way to work that morning. Once at the hotel, I met my friends who spent the night. We took awhile to joke about how early it was and attempt to eek out a few more minutes of charge on our cell phones until we had to catch the trolley to Grant Park. Once there, we were met with this sight
and with the goal in mind.
We had about an hour and half to kill since wave 2 started at 9:15. Within that time, we also located the bathrooms and had some cute group shots taken by spectators.
Three of us deliberately placed ourselves in the last corral of the entire race. This worked out well for our pacing but not so much for the waiting around business. By the time we crossed the start line, it was about 10:00, however, Corral K is where the magic happens :-)
Just about 19,000 people ahead of us, but who cares, look where we get to run!! LOVE my city!!!! Race time begins and we manage to keep ourselves entertained with lovely conversation despite losing battery power to our phones. My friend and I mentioned that the energy was amazing. Music was playing at mile markers and starting at mile 3, people where cheering like crazy! The last mile, our trio decided to split up and finish at our best. I came in just over an hour for 5 miles having NEVER run 5 miles in my life.. I'd say I did pretty good. After the race, we decided to meet up at the infamous banana stands for a celebratory banana and beer!
I was inspired by others posts about what they did to honor those affected. My goal was to sprint a mile. I came in at 10:02 which is my fastest mile run! I'm insisting on 11:00 mile averages for 5k races. Let's see what happens on May 11th.
Tuesday, April 9, 2013
Ultimate Blog Party Post
Blogging is new to me and was born out of the need to communicate information on my blossoming family; and to help others with special needs children to relate and gain a better sense of identity through the blog community.
I am a teacher and mom of a 2.5 year old daughter and an 11 month daughter who was diagnosed with 18q- syndrome (1 in 40,000).
I am a teacher and mom of a 2.5 year old daughter and an 11 month daughter who was diagnosed with 18q- syndrome (1 in 40,000).
Monday, March 25, 2013
Moving Along
Last week James and I decided on a plan in terms of what we wanted to accomplish for the fundraiser over Spring Break. He is off a total of three days this week, which leaves us a good chunk of time for planning and doing.
Today turned out to be quite a productive day. We headed out to Bourbon Street around noon to meet with the Fundraiser Coordinator. She answered a few questions for us and gave us a tour of the room along with suggestions of how to maximize space in the room. Next stop was Archer Bank in Mount Greenwood to setup an account for the fundraiser. This took awhile, but I was impressed with the ease of the registration process and what will be provided for us the day of the fundraiser. Once home, James registered "A Day for Adele" as a domain name with Go Daddy. We need to register the fundraiser account with paypal ASAP so we can include a paypal button on our webpage for pre-sale tickets. Tomorrow and for the rest of the week, James and I will be adding to the web page and will create a facebook page. Our goal is to get both launched by Friday.
Adele is officially crawling as her main mode of transportation. In true Adele form, she rounds out hitting this developmental milestone right at the edge of when it's considered delayed; she will be 11 months old on Wednesday. We also noticed that she "dances". Jade was giving us one of her many performances, and Adele decided to bop her head and body to the music. CUTE!
For the last two weeks, I have spent the majority of car rides listening to "Far From the Tree". This is because the book is 1000 pages so as you can imagine, the audible version goes on forever as well. I am completely captivated by this book and cannot WAIT to discuss it at book club in August. I am continually impressed with the author's ability to weave family interviews, history, statistics and research in each area of disability. I am walking away with a three-dimensional view of people with disabilities that I have not worked with, and a broader perspective of those I am familiar with.
Today turned out to be quite a productive day. We headed out to Bourbon Street around noon to meet with the Fundraiser Coordinator. She answered a few questions for us and gave us a tour of the room along with suggestions of how to maximize space in the room. Next stop was Archer Bank in Mount Greenwood to setup an account for the fundraiser. This took awhile, but I was impressed with the ease of the registration process and what will be provided for us the day of the fundraiser. Once home, James registered "A Day for Adele" as a domain name with Go Daddy. We need to register the fundraiser account with paypal ASAP so we can include a paypal button on our webpage for pre-sale tickets. Tomorrow and for the rest of the week, James and I will be adding to the web page and will create a facebook page. Our goal is to get both launched by Friday.
Adele is officially crawling as her main mode of transportation. In true Adele form, she rounds out hitting this developmental milestone right at the edge of when it's considered delayed; she will be 11 months old on Wednesday. We also noticed that she "dances". Jade was giving us one of her many performances, and Adele decided to bop her head and body to the music. CUTE!
For the last two weeks, I have spent the majority of car rides listening to "Far From the Tree". This is because the book is 1000 pages so as you can imagine, the audible version goes on forever as well. I am completely captivated by this book and cannot WAIT to discuss it at book club in August. I am continually impressed with the author's ability to weave family interviews, history, statistics and research in each area of disability. I am walking away with a three-dimensional view of people with disabilities that I have not worked with, and a broader perspective of those I am familiar with.
Thursday, March 14, 2013
Off we go
After dinner routine in our house includes family time in the loft. Tonight I noticed that Adele was especially physically confident. I was over-the-moon when I saw her lift herself off of her belly, onto her knees, into a crawling position and actually crawl a foot! She attempted and succeeded a few times before and after the required excited mama video.
When you have a child with a disability, milestones that are achieved cause an amplified reaction by family members. This is for a few reasons: you never know what milestone may or may not happen at all, and chances are, it took longer for your child to reach given milestone.
I am listening to the audio book version of "Far From the Tree" and have reached the chapter on Down Syndrome. Since the author does not include a chapter on other types of chromosomal abnormalities, this is most likely the chapter I will relate to the most. A story is shared about a boy born in the late 60's with DS. Dr.'s advised this family to put the boy in a "home" since he would not ever recognize his family or learn anything. The family visits a groundbreaking institution with progressive doctors and psychologists that suggest nurture may superseded nature. This mom took off running with all types of EI like activities and therapies. The boy was reading at a fourth grade level when he was in first grade. The parents began advising other families of children with DS to follow in there footsteps.
Then it happened. Adolescence, the moment when her son showed both social and academic discrepancies amongst his peers. He begins to become depressed and is taken to see a therapist. Boy graduates with a high school diploma and is eventually placed in a small, well staffed group home. He is too smart for other individuals with DS, but not quite socially up to par with other adults. He is still rather lonely but finds solace in his roommate at the group home.
The mother reflects on whether or not it was a good idea to push her son as much as she did. Her observation was that lower functioning individuals with DS, tended to appear more happy. In subsequent lectures, the mother is realistic with new parents of babies with DS.
I have said before that I am both cursed and fortunate to be in the field of Special Education, having a child with a disability. I can bring a "big picture" sense of what Adele's life may entail thanks to my career, however, I also know a storm is brewing. This is ALSO true of Jade, but Adele's storm will most likely be more intense for many reasons.
For now, I am savoring Adele & Jade's achievements and milestones, but I never take an eye off the approaching storms.
When you have a child with a disability, milestones that are achieved cause an amplified reaction by family members. This is for a few reasons: you never know what milestone may or may not happen at all, and chances are, it took longer for your child to reach given milestone.
I am listening to the audio book version of "Far From the Tree" and have reached the chapter on Down Syndrome. Since the author does not include a chapter on other types of chromosomal abnormalities, this is most likely the chapter I will relate to the most. A story is shared about a boy born in the late 60's with DS. Dr.'s advised this family to put the boy in a "home" since he would not ever recognize his family or learn anything. The family visits a groundbreaking institution with progressive doctors and psychologists that suggest nurture may superseded nature. This mom took off running with all types of EI like activities and therapies. The boy was reading at a fourth grade level when he was in first grade. The parents began advising other families of children with DS to follow in there footsteps.
Then it happened. Adolescence, the moment when her son showed both social and academic discrepancies amongst his peers. He begins to become depressed and is taken to see a therapist. Boy graduates with a high school diploma and is eventually placed in a small, well staffed group home. He is too smart for other individuals with DS, but not quite socially up to par with other adults. He is still rather lonely but finds solace in his roommate at the group home.
The mother reflects on whether or not it was a good idea to push her son as much as she did. Her observation was that lower functioning individuals with DS, tended to appear more happy. In subsequent lectures, the mother is realistic with new parents of babies with DS.
I have said before that I am both cursed and fortunate to be in the field of Special Education, having a child with a disability. I can bring a "big picture" sense of what Adele's life may entail thanks to my career, however, I also know a storm is brewing. This is ALSO true of Jade, but Adele's storm will most likely be more intense for many reasons.
For now, I am savoring Adele & Jade's achievements and milestones, but I never take an eye off the approaching storms.
Wednesday, March 6, 2013
Inventory
As we continue to roll through 2013, it occurred to me that I should check on my goals for 2013, here's a re-cap:
New goals (gotta have them!):
1. Run the Shamrock Shuffle in Downtown Chicago. Haven't signed up yet! Thanks for the reminder blog!
2. Develop my photography skills. I am not currently taking classes, however I am toying around with different apps and editing functions.
3. Read more! Yes!! I have read 5 out of my goal of 20 for year... Thinking I may surpass this.
4. Improve my writing skills. I've been doing my damnedest to use their, there and they're properly!
5. Continue to grow as a teacher. I'm working on it... So far I can give myself kudos for learning how to utilize an I-Pad in my classroom and with individual students.
Another goal that I need to bump to the top of this list comes in the form of waking up earlier during the week. I have been cutting it way to close to show-time at work these days and it has not gone unnoticed. I discovered a wonderful app called "Sleep Cycle", that essentially tracks your movement while you sleep. Supposedly, when you are still, you are in REM sleep, when you move around, you are in Non-REM sleep. You put your charging phone next to your pillow under a mattress case and set your alarm for a given time. The app will wake you up within a half hour before your set time based on when you appear to be in light sleep. The theory is that if you wake up during light Non-REM, you will wake up more refreshed and less stressed. You need 5 days of data to start gathering trends about what may affect your sleep, here's a snapshot of Night 1:
My goal is to not only get up earlier for work, but it is to get up earlier to provide some "me" time before the kids get up and to gather data and analyze what behaviors create the best climate for quality sleep. While I realize that having two children under the age of 3 will throw a wrench into this occasionally, I have two very good little sleepers, so unless illness arises, I'll be okay.
I'm following a blog that created a 30 day sleep challenge. One of the suggestions was to try to be more aware of set-backs that will disrupt your day. My threshold for set-backs was much lower than it is now thanks to children and life experience in general. The advice is to anticipate disruptions and be pleasantly surprised when they don't occur. I am going to continue to work on this as to help keep a positive attitude through out my day.
Here's a few snow day pics of the gals
Sunday, February 24, 2013
Lovely Weekend
James left for Michigan Beer Fest on Friday. He dropped the girls off at my parents so I could also get some time to myself. Friday night was spent with some lovely teacher friends aka "Monkeys". Lots of laughs and swapping of stories and gossip from the trenches ensued. I always look forward to these get- togethers.
Saturday morning was spent with more lovely ladies (and a few gentlemen), for Breakfast at Juicy O. After breakfast, my friend and I headed over to see if we could schedule our tattoos for sometime on Saturday. We were able to get in at 7:30 that night. My friend dropped me off and I decided to read for awhile, then catch up with "Pit Bulls and Paroles". At about 4:00, the power randomly went out, so I text Comed to inform them of the outage and decided that the only thing I could do was read! Luckily my I-Pad had full charge. By 6:30, the power was back on and I was ready to pick up my friend to get our tattoos. My tattoo artist was an ex-graffiti artist who threw out the f-bomb once every 30 seconds. I only had to endure about 30 minutes of f-bombs and it was finished!
I decided to place the tattoo just below my neck in the center of my upper back. I wanted to put this tattoo in a place that would see some, but not to much, sunlight in the summer time! My friend and I decided to celebrate our new ink by having a glass of wine at Fox's. We had a great time chatting along with my friend's neighbor who also happened to just end her shift at the restaurant.
This morning I got a run in and by 10:30 my girls were back in my arms. Threw a bag and a stroller together and we headed out to DCM for some playtime with my co-worker's sons. Two hours later, I had two sleepy babies in my car ready to see their daddy.
After I dropped the girls off, I ran over to Starbucks for coffee with a friend. I was thrilled to hear about some of her new ideas and exchanged a few of my own. We have decided to support each other in our respective causes, which is great because I know I can depend on her! Lovely conversation as usual.
"Reshaping our lives to fit our larger dreams." -Abraham Lincoln
Saturday, February 16, 2013
Lately
Today I realized that it has been awhile since I've blogged. The last two weeks, we have been busy in all areas of our life.
Valentine's Day is one of my favorite holidays, so I was excited when James and my students helped to make it a special day for me. I received a few red carnations and some chocolate from a few of my students which made my day. After school, I had three students in my co-taught class come by and review for a quiz. Since I am a Special Education Teacher, I always feel quite flattered when Gen. Ed. students come to me with questions and concerns because it reminds me that I can make connections in both worlds!
In the evening, James and I scurried to get the girls ready before we headed out to the city for dinner at Nick's Fishmarket Grill in The Merchandise Mart. I was happy that Nick's was not crowded so we we're able to have a great conversation and enjoy our food in a relaxed environment. I was also happy to have a few delicious chocolate covered strawberries delivered to my classroom in the afternoon.
Our second mommy to our girls updates us throughout the day through facebook messenger. We get pictures and blurbs of what the girls are doing. I was thrilled to see the most beautiful message about how Jade is compassionate and fair with her friends and stands up for them. In a world that often values intelligence and competition as the highest commodities, it thrills me to see that our values are shinning through in our daughter. It's not that I don't think a healthy dose of talent and intelligence aren't excellent and needed traits, it's just that without a core foundation of values, talent and intelligence can create a nightmare in schools, work and personal lives. I couldn't be more proud.
We have a fun filled three day weekend ahead! Eat, Drink and be Merry everyone!
Valentine's Day is one of my favorite holidays, so I was excited when James and my students helped to make it a special day for me. I received a few red carnations and some chocolate from a few of my students which made my day. After school, I had three students in my co-taught class come by and review for a quiz. Since I am a Special Education Teacher, I always feel quite flattered when Gen. Ed. students come to me with questions and concerns because it reminds me that I can make connections in both worlds!
In the evening, James and I scurried to get the girls ready before we headed out to the city for dinner at Nick's Fishmarket Grill in The Merchandise Mart. I was happy that Nick's was not crowded so we we're able to have a great conversation and enjoy our food in a relaxed environment. I was also happy to have a few delicious chocolate covered strawberries delivered to my classroom in the afternoon.
Our second mommy to our girls updates us throughout the day through facebook messenger. We get pictures and blurbs of what the girls are doing. I was thrilled to see the most beautiful message about how Jade is compassionate and fair with her friends and stands up for them. In a world that often values intelligence and competition as the highest commodities, it thrills me to see that our values are shinning through in our daughter. It's not that I don't think a healthy dose of talent and intelligence aren't excellent and needed traits, it's just that without a core foundation of values, talent and intelligence can create a nightmare in schools, work and personal lives. I couldn't be more proud.
We have a fun filled three day weekend ahead! Eat, Drink and be Merry everyone!
Monday, February 4, 2013
You Make Me Proud Everyday
Jade has gymnastics Monday nights and today we had a few kiddos missing and some newer members of our little group. Jade took a leadership role in the class by doing warm-up exercises well and was able to remember the names of several stretches. Her teacher came up to us and noted how much she has grown in such a short time. I was one proud mama! Right after the kids received their stamps and gave the teacher a hug, I gave Jade a huge hug and told her that she makes me proud everyday.
While in Florida, I came across a colorfully painted sign and picture frame with the phrase: "You Make me Proud Everyday". I instantly fell in love with it for it's color and message.
Unfortunately, part of my job entails observations of parents who do not fully accept their children as they are. These parents often push or deny the reality of where their child functions academically and socially, and look to anyone they can to place blame for a horizontal identity.
Last night was one of two nights in the past week that I was having difficulty digesting Adele's needs. I have moments where I am overwhelmed with the unknown related to what the deletion may bring on us financially, emotionally and physically.
I finally began reading "Far From the Tree" and already have so many pieces of research and insight to reflect on in thirteen pages! One thing that stood out for me was this excerpt: "Children whose defining quality annihilates that fantasy of immortality are a particular insult; we must love them for themselves, and not for the best of ourselves in them, and that is a great deal harder to do." It is so difficult to find words to express the emotions that I have felt since finding out about the 18q- so I was happy to find some that fit the reality of my situation.
Adele makes me proud everyday. I revel in her smile and love for life at such a young age, her innate ability to take things as they come. I believe she is an old soul and has about ten-million things to teach us. I am looking forward to the challenges and triumphs these lessons will bring.
Day by day..
While in Florida, I came across a colorfully painted sign and picture frame with the phrase: "You Make me Proud Everyday". I instantly fell in love with it for it's color and message.
Unfortunately, part of my job entails observations of parents who do not fully accept their children as they are. These parents often push or deny the reality of where their child functions academically and socially, and look to anyone they can to place blame for a horizontal identity.
Last night was one of two nights in the past week that I was having difficulty digesting Adele's needs. I have moments where I am overwhelmed with the unknown related to what the deletion may bring on us financially, emotionally and physically.
I finally began reading "Far From the Tree" and already have so many pieces of research and insight to reflect on in thirteen pages! One thing that stood out for me was this excerpt: "Children whose defining quality annihilates that fantasy of immortality are a particular insult; we must love them for themselves, and not for the best of ourselves in them, and that is a great deal harder to do." It is so difficult to find words to express the emotions that I have felt since finding out about the 18q- so I was happy to find some that fit the reality of my situation.
Adele makes me proud everyday. I revel in her smile and love for life at such a young age, her innate ability to take things as they come. I believe she is an old soul and has about ten-million things to teach us. I am looking forward to the challenges and triumphs these lessons will bring.
Day by day..
Thursday, January 31, 2013
Can't shake this one
I'm having a very difficult time shaking off my bad mood this week. I've been less than patient at home and have been slightly on edge at work. I get into these cycles ever so often and they also come with a lot of doubt and self criticism. I'm sure this is related to a toddler who is resisting a reasonable bed time, some challenges at work, not having a big enough house, worrying about money to eventually buy a bigger house, how everyone perceives me every second of the day which includes but is not limited to: students, parents of students, co-workers, administrators, friends, members of groups, family, the cats (no not really), etc..... I know that some of you may not empathize with my current state, and that's okay. I am not looking for anyone to feel sorry for me, I'm just hoping that if your also having a bad day or week, you have found a compadre.
Since I began taking Zoloft for PPD, I have had far fewer of these weeks so the next line of defense for me is a check-up with my dear friend Deidre. Therapy has been one of the most outstanding on-going experiences I've ever had. I truly believe that all of us could or will benefit from counseling at one time or another. I get the sense there is still a lot of stigma attached to talking openly about counseling and medication. The more I've spoken openly about my issues and how counseling and meds have helped, the more people have come forward with there own experiences.
Hopefully Tina Fey will help to distract me from my bad mood this evening.
Since I began taking Zoloft for PPD, I have had far fewer of these weeks so the next line of defense for me is a check-up with my dear friend Deidre. Therapy has been one of the most outstanding on-going experiences I've ever had. I truly believe that all of us could or will benefit from counseling at one time or another. I get the sense there is still a lot of stigma attached to talking openly about counseling and medication. The more I've spoken openly about my issues and how counseling and meds have helped, the more people have come forward with there own experiences.
Hopefully Tina Fey will help to distract me from my bad mood this evening.
Monday, January 28, 2013
New Routine
We are finally starting to get out of the haze that is the first nine months of having two children. That being said, I came to realize the structure of our evening has essentially been non-existent since Adele was born.
Yesterday overall was a crappy day, however I don't like to wallow in funks for to long so I scrapped myself up and had coffee with my friend. She has two children right around the same ages as Adele and Jade and I mentioned my issues with routine. She discussed her routine with me and I came out with a new sense of ambition to re-create what we had before both kiddos.
Adele will continue to go down at 7:00, however, we are starting Jade's routine of books and brushing teeth at 7:30 with the intention of "lights out" at 8:00. Once in her room, I could care less if she dances a jig or reads a million books with her flashlight, as long as she stays in her room and eventually goes to sleep. I know she will need to be told to go back to her room a million times, however she takes well to structure so in a few days to week, I'm sure we'll be in a good place. It is now 8:22 and she has only come out once since 8:00... Fingers crossed but of course I probably just jinxed myself.
One of the members of my 18q- group happened to post about a book titled "Far the Tree: Parents, Children, and the Search for Identity". It is a book that reflects how families transform experiences and difficulties with exceptional children (Ex: Down syndrome, autism, chromosomal abnormalities, schizophrenia, children who are prodigies, children of rape and transgender children) into meaning and a richer quality of life. I am excited to read this book since I am looking for a little inspiration and identity.
I realized through talking with my friend yesterday, that what is becoming the most difficult for me personally, is trying to find an identity in terms of parenting Adele. I explained to my friend that I often don't know how to respond when someone asks me how Adele is doing. Should I tell them how her 18q- is doing or how SHE is doing? What is being implied? My friend also very bravely and honestly admitted that she does not know how much to ask or how little to ask. This is very thoughtful and I understand the conundrum. Here is what seems to be a very simple solution to this problem: If you want to know how Adele is doing, ask.. If you also want to know how things are going with her development or health, ask about her development or health. I am happy to answer questions.
Yesterday also brought the first day that I have been out in public with Adele while she has her BAHA on. We got a few looks but overall, people were rather unfazed by it. This was comforting and I was reminded that I am more worried about it than I need to be.
Yesterday overall was a crappy day, however I don't like to wallow in funks for to long so I scrapped myself up and had coffee with my friend. She has two children right around the same ages as Adele and Jade and I mentioned my issues with routine. She discussed her routine with me and I came out with a new sense of ambition to re-create what we had before both kiddos.
Adele will continue to go down at 7:00, however, we are starting Jade's routine of books and brushing teeth at 7:30 with the intention of "lights out" at 8:00. Once in her room, I could care less if she dances a jig or reads a million books with her flashlight, as long as she stays in her room and eventually goes to sleep. I know she will need to be told to go back to her room a million times, however she takes well to structure so in a few days to week, I'm sure we'll be in a good place. It is now 8:22 and she has only come out once since 8:00... Fingers crossed but of course I probably just jinxed myself.
One of the members of my 18q- group happened to post about a book titled "Far the Tree: Parents, Children, and the Search for Identity". It is a book that reflects how families transform experiences and difficulties with exceptional children (Ex: Down syndrome, autism, chromosomal abnormalities, schizophrenia, children who are prodigies, children of rape and transgender children) into meaning and a richer quality of life. I am excited to read this book since I am looking for a little inspiration and identity.
I realized through talking with my friend yesterday, that what is becoming the most difficult for me personally, is trying to find an identity in terms of parenting Adele. I explained to my friend that I often don't know how to respond when someone asks me how Adele is doing. Should I tell them how her 18q- is doing or how SHE is doing? What is being implied? My friend also very bravely and honestly admitted that she does not know how much to ask or how little to ask. This is very thoughtful and I understand the conundrum. Here is what seems to be a very simple solution to this problem: If you want to know how Adele is doing, ask.. If you also want to know how things are going with her development or health, ask about her development or health. I am happy to answer questions.
Yesterday also brought the first day that I have been out in public with Adele while she has her BAHA on. We got a few looks but overall, people were rather unfazed by it. This was comforting and I was reminded that I am more worried about it than I need to be.
Thursday, January 24, 2013
Reality of Life
As much as I am thankful that Adele is not very delayed in all areas except speech/language, I can't help but to have days where my heart drops when I see picutres and hear stories of other kiddos her age doing things that she isn't..... As much as I LOVE the fact that she can hear within the normal range with the BAHA, it is going to become inevitable when she wears it out in public we will get stares and I'm sure even the occasional daring person to ask us about it.
I will get over this and move forward, but in order to do that, I need to acknowledge my frustration. Thanks for reading!
On another more positive note, I wanted to take an opportunity to let everyone know that my husband rocks! He is a model father and our partnership in raising our girls is second to none. I couldn't be the teacher, friend, mom and wife I am today without his support. The girls benefit a thousand times over for his involvement in every aspect of their lives. Three cheers for hubby!
I'm hoping we have reached the end of our pre-school search! Bonnie McBeth Learning Center is part of Plainfield District #202 and offers pre-school for non at-risk kiddos on a lottery basis. We have a plan "b" should we not get selected but either way it's exciting to think that Jade will be in pre-school next school year.
Adele continues to do well with her BAHA and recently had an appointment with a Pediatric Endocrinologist. The visual looked good but of course we need to do blood work to check levels of hormones and other related items. What I have learned from my 18q- yahoo group is that many things related to endocrinology don't come up until they hit puberty. At least we know what to expect.
I will get over this and move forward, but in order to do that, I need to acknowledge my frustration. Thanks for reading!
On another more positive note, I wanted to take an opportunity to let everyone know that my husband rocks! He is a model father and our partnership in raising our girls is second to none. I couldn't be the teacher, friend, mom and wife I am today without his support. The girls benefit a thousand times over for his involvement in every aspect of their lives. Three cheers for hubby!
I'm hoping we have reached the end of our pre-school search! Bonnie McBeth Learning Center is part of Plainfield District #202 and offers pre-school for non at-risk kiddos on a lottery basis. We have a plan "b" should we not get selected but either way it's exciting to think that Jade will be in pre-school next school year.
Adele continues to do well with her BAHA and recently had an appointment with a Pediatric Endocrinologist. The visual looked good but of course we need to do blood work to check levels of hormones and other related items. What I have learned from my 18q- yahoo group is that many things related to endocrinology don't come up until they hit puberty. At least we know what to expect.
Monday, January 21, 2013
Second Home
Jacksonville Florida has become a second home to our family. Back in the day (aka 6 years ago), my visits to JAX included plenty of shenanigans including meeting folks from Conneticut who specialized in making maple syrup and wore stick on stars....... Red-eye flights led us into 4 a.m. debauchery. Good times were had by all!
I now have not only my cousin and her family in JAX, but also my dear friend from our mom's group. This particular trip ended up with me visiting on my own for a mini get-away. My first two days were a whirlwind of shopping, dinning and wining! While on my trip, I was able to meet some new friends who live down the street from my dear friend.
One of the more hilarious moments came in the form of my attempt to get coffee in St. Augustine Saturday Night. My friend and I stopped at a coffee shack after dinner and saw 3 people in line ahead of us.... A half hour later and many sarcastic comments about how slow things are in the south, I drank one of the best Lattes I've ever had....
My cousin and her family graciously picked me up from my friend's place on the way back from a trip to Disneyworld & IKEA...... Yes, I said Disneyworld & IKEA, all in one day! We had a relaxing evening of sushi by the fire and good conversation. All of us turned in early and before you knew it, I was on a plane back to Chicago and the ungodly weather that exists here.
Coming up at the end of July is the Chromosome 18 Research & Registry Annual Conference. We are making this a family and trip and low and behold, the conference is being held in Savannah Georgia this year, which is 3 hours north of Jacksonville. We are excited to be able to share this opportunity with our extended Jacksonville family! I am also thrilled for Jade to reconnect with her good friend and with my cousin's daughter!
More great times to come in the Southeast. Life is good!
Monday, January 14, 2013
Items on the Front Burner
We've got a few pots on the fire these days and one of them relates to deciding where to send Jade to preschool. Optimally, we will be accepted into Bonnie McBeth Early Learning Center, by chance of lottery, which is connected to Plainfield School District. Our "plan B" is the Park District. I'm in denial of the fact that Jade is indeed getting older. Jade and I attended a Children's Book Club meetup yesterday and many of the kiddos are getting ready to start Kindergarten next year so that was a nice reminder to me to take every second I can to appreciate the here and now with my girls.
I've been happy with my commitment to "Project Life 365". I am enjoying the challenge of thinking of a great photo to take related to the daily theme. This also has been allowing me to develop my skills as a casual photographer.
Adele has been quite the chatterbox and mover these days. She's not quite crawling yet, but that girl finds a way to get what she wants (in more ways than one!) I absolutely adore her personality. She is such a vibrant and cheerful baby! Her smile is absolutely contagious and I can't wait to see what this little person has in store for us!
The semester is off to a good start. I've got a fabulous group of kiddos in all of my classes....
Life is Good!
I've been happy with my commitment to "Project Life 365". I am enjoying the challenge of thinking of a great photo to take related to the daily theme. This also has been allowing me to develop my skills as a casual photographer.
Adele has been quite the chatterbox and mover these days. She's not quite crawling yet, but that girl finds a way to get what she wants (in more ways than one!) I absolutely adore her personality. She is such a vibrant and cheerful baby! Her smile is absolutely contagious and I can't wait to see what this little person has in store for us!
The semester is off to a good start. I've got a fabulous group of kiddos in all of my classes....
Life is Good!
Thursday, January 10, 2013
Eat, drink and be merry, for tomorrow we die..
Picture it, August 5th 2006, Starved Rock, gorgeous 80 degree summer day and an outstanding wedding in progress. "Eat, Drink and be Merry" via Dave Matthews Band was our theme for the day, embossed on our cocktail napkins and other wedding accessories. Today was one of those days when I go back to this theme as a philosophy.
Our LHS community and my department has suffered several losses this school year. Today we were informed of the loss of a recently retired member of our department. The loss of this individual came as a surprise which devastated many staff members.
In reflecting on the death, I was talking to one of my friend's at work and mentioned that I am rather unfamiliar with how to deal with death since I am fortunate enough to have almost every single one of my extended family alive and kicking.
What I can say from my limited experience in dealing with a loss is that it slaps you back into the reality that we are not on this earth forever, so cherish the relationships you have and ignore the "noise" that is your own worry of what others may be thinking.
James and I got to live a little of the "Eat, Drink and be Merry" philosophy by cooking, sharing some delicious craft beers and getting a few good laughs in with friends. This is what life is all about.
"Your Life is Now"- John Mellencamp
Our LHS community and my department has suffered several losses this school year. Today we were informed of the loss of a recently retired member of our department. The loss of this individual came as a surprise which devastated many staff members.
In reflecting on the death, I was talking to one of my friend's at work and mentioned that I am rather unfamiliar with how to deal with death since I am fortunate enough to have almost every single one of my extended family alive and kicking.
What I can say from my limited experience in dealing with a loss is that it slaps you back into the reality that we are not on this earth forever, so cherish the relationships you have and ignore the "noise" that is your own worry of what others may be thinking.
James and I got to live a little of the "Eat, Drink and be Merry" philosophy by cooking, sharing some delicious craft beers and getting a few good laughs in with friends. This is what life is all about.
"Your Life is Now"- John Mellencamp
Sunday, January 6, 2013
Twas the Night
Twas the night before work, when all through the house not a creature was stirring not even a mouse. The work bags were placed near the front door with care, In hopes that dawn would never draw near!
The children were nestled all snug in their beds, while nightmares of math class danced in their heads. And mamma in her robe, and I in my sweats, had just settled our brains for a short winer's nap.
Remember to write 2013 tomorrow!!
The children were nestled all snug in their beds, while nightmares of math class danced in their heads. And mamma in her robe, and I in my sweats, had just settled our brains for a short winer's nap.
Remember to write 2013 tomorrow!!
Tuesday, January 1, 2013
I appreciate you, let me tell you how.
I don't think people truly compliment each other enough.. There is the "oh I love your new haircut" or the "great job" moments which are okay. I don't think we take enough time as a society to actually speak or write with some level of detail and reflection, how we appreciate our relationships.
I started thinking about this in response to my need to express gratitude towards our "Army" of friends and family that have supported us over the past year in response to Adele. I've had personal conversations with many of you out there, but not all. Beyond that, I don't think I've done a good of job communicating exactly what it is about each of you I think and admire.
Here's my request: Please "like" this blog post if you are interested in having me send you an email or facebook message about how great you are and why! Though I would love to send individual letters with cards to each of you, I think for the sake of time and my need to complete this project, I will stick to email or facebook message.
P.S. Please give me a few days to respond :-)
Go!
I started thinking about this in response to my need to express gratitude towards our "Army" of friends and family that have supported us over the past year in response to Adele. I've had personal conversations with many of you out there, but not all. Beyond that, I don't think I've done a good of job communicating exactly what it is about each of you I think and admire.
Here's my request: Please "like" this blog post if you are interested in having me send you an email or facebook message about how great you are and why! Though I would love to send individual letters with cards to each of you, I think for the sake of time and my need to complete this project, I will stick to email or facebook message.
P.S. Please give me a few days to respond :-)
Go!
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