I had a big meeting with the public school district yesterday to decide if she would qualify for their Individualized Education Program or IEP. It's a specialized plan for a child with disabilities in a learning environment. I had mixed feelings about the process since I don't consider Jordan disabled... But I kind of wanted an IEP so I could continue to get assistance in the expenses needed to keep Jordan in occupational and physical therapy.
The school district spent HOURS working on her case. And their conclusion: She's not disabled. To hear them say that is wonderful. I'm proud of all the hard work we've done to make sure Jordan is self-able and confident. She's a take charge kind of girl and we've worked very hard to keep her from falling behind in any type of physical skills. At the same time I'm bummed because her therapy becomes an out-of-pocket expense. Interestingly, the school district said they plan to monitor Jordan to see if she ever needs more analysis and assistance. My guess is that I'll never let her fall behind enough to have that happen.
So I'm in a mixed place... I'm honored to know they consider Jordan so well adjusted and able. They complimented us on our parenting and advocacy. It's just kind of hard knowing all of the resources out there that can help her -- but we can't tap into them because we've worked so hard to get where we are. It's kind of funny. They will only help kids that are behind in skills... And I want to work hard to make sure Jordan never falls behind. Shouldn't our system have that same attitude? Prevention first?
Today I had another really cool moment with Jordan. I was working on dinner when Jordan pulled out her tricycle. I keep it in the house... I figured why not. Anyway... She pulled it out and ASKED for her bike arm. Wow. She's never done that before. But that's the whole point to her prosthetic -- wear it when she needs it. Not only did she want to put on her arm... She wanted to do it. She didn't put it on perfectly... but she did both steps of rolling on the arm gel sleep and clicking her arm on. She's so amazingly independent. She didn't ride her tricycle very long -- She needs her seat moved further back so the bike arm is easier to use. That lack of an elbow really makes this a challenge. But as Jordan proves every second, she'll find a way.
In Jordan's ongoing quest to get better at dressing herself... She's running around the house without clothes on a lot more often. Her brother never did this... So it's kind of funny to be sitting around in the house and suddenly notice a tiny, skinny little person walking by.
The birthday celebrating didn't end when we left Disney World (which by the way - left a balloon and a card signed by all of the major Disney characters in our hotel room the night before we left). We drove 10 hours to Knoxville to visit my bestest friend in the whole wide world who lives there. Shockingly - we hadn't see her in person in a VERY VERY long time. Even more shocking, she hadn't met Jordan in person yet! But that didn't stop my dear friend Tisha from decorating and buying presents for both kids. It was so freaking sweet.
Jordan hadn't removed the pink hair yet - so we continued to celebrate Miss Princess on her official third birthday. It was the 100 day celebration! (Or 3 day... who's counting?)
It's amazing to think how far we've come in three years. My little gorgeous baby is a now firecracker three-year-old full of energy that far surpasses her tiny frame. Jordan is a handful in so many ways. What she's done in the last year just amazes me. She tolerated an arm that never fit or worked properly... And now she has an arm that is really offering her some ways to balance, play and learn. She didn't wear it much during our vacation, but she's already back on track since we returned home. She started dance class, learned how to go potty on her own and is FIERCELY independent when it comes to doing things for herself. I actually sat and waited for her to put on thick tights on her own this morning. It took her 10 minutes, but darn it - she put them on! Jordan's love of pretending to be a princess, chef, mommy, super hero and many other things blossomed in the last year. You never know when she's going to pretend to be a mommy or a ballerina or a little baby that needs cuddles. She got really good at egging her brother on - They will start fighting the MOMENT you leave the room. But more often than not, she will run over and give Cameron a hug or try as hard as she can to keep up with him. I'm so proud to be her mommy. I'll admit, she keeps getting cuter and she can melt me from time to time and that lets her get away with stuff. At the same time, she's very respectful and worries about others. She's mindful and aware of emotions and needs. I can only imagine the amazing adventures we will have in her fourth year of life!
Happy birthday Boo!!
The kids had a chance to go to Disney World for two days this year... We woke up and got out of the door in South Florida at 5am so we could check in early at the All Star Music Resort and head over to visit Animal Kingdom and Hollywood Studios. My parents came along for the wild ride as well. Our first day was kindly sponsored by a number of ABC O&O reporters who work in Toledo, so we were able to park hop for a day - that's why I was so intent on visiting two parks with the kids. They got a chance to visit a couple of very cool animal experiences - one a "hike" through an animal area (including having a chance to see many gorillas) and the other was a safari ride through the Animal Kingdom natural preserve. It was amazing to see the number of animals we saw in such a short amount of time.
After a bus ride over to the Hollywood Studios we stood in a very, very long line (110 minutes or so) to ride the Toy Story Mania 4D experience. It was so, so cool. Even the waiting line was exciting. We got the full Andy's Room experience as we waited. We also got to see June and Quincy from Little Einsteins. (Jordan loved that) We ran back to Animal Kingdom to enjoy dinner and play in the Dino-Rama area.
We took the kids and the grandparents back to the hotel and ran off to spend extra hours on our own in the Magic Kingdom. The holiday decorations on the castle are just plain beautiful. I don't remember it that way two years ago. Randy and I rode all of the rides we normally don't get to ride because of the kids. That was pretty fun.
The next day we had a quickie birthday present opening time for Jordan before running off to the Magic Kingdom. I presented Jordan with her 3 year old t-shirt that I won in the Type-A Mom's Back to School party back in September. Her t-shirt was from Tote And Tee - a very cool online store with very sweet shirts. Jordan looked beautiful and excited in her shirt. It certainly screamed: I'm a big girl. We added a necklace full of Disney pins and a crown to complete the "look" for the day. That is... before she went to her big birthday gift: A trip to the Bibbidi Bobbidi Boutique to get princess hair. We learned a big lesson during this trip: You want to be in the Magic Kingdom the moment is opens in the morning. No one is there. We walked onto four rides before 9:30. It was amazing. We all enjoyed the Buzz Lightyear ride, the Monsters Incorporated Laugh Floor (which we saw the night before and I LOVE it.), It's a Small World and Peter Pan. The kids were in heaven.
The boys and girls split so Jordan could see Mickey and Minnie and the boys could get a Fast Pass for Splash Mountain. Mickey and Minnie were wonderful and took bunches of pictures with Jordan. The boys got us passes and we met up with a former student of mine and his wife. She broke her foot recently and that mishap taught us another lesson about Disney: You want to be injured but not too injured to enjoy Disney. A wheelchair gets you to the front of every ride along with the rest of the people you're visiting the park with. That access made it possible for Cameron to ride every roller coaster. They got to enjoy a pile of rides while Jordan got pretty. Walking around the park with a little white and pink poofball was really funny to watch. I can't tell you how many random people took pictures of Jordan and I giggled inside thinking about how many of those photographers are looking at their pictures now and just realizing the little girl who was dressed up only had one hand! That was another lesson we learned during this trip: If you dress your little girl up to a level that is just shocking and a bit over the top, people won't notice little differences like a missing arm. (hee hee)
The princess treatment wasn't over... We watched a holiday parade where Santa even noticed Jordan and wished her a happy birthday. We rode the Jungle Cruise and then took Jordan and the rest of the family to a Cinderella-themed dinner at 1900 Park Fare in the Grand Floridan hotel. It was quite the experience... I documented that in a separate post. Anyway, the day exhausted Miss Jordan and after she passed out in my arms, I passed her over to my parents to take her back to the hotel room. Apparently that hand off didn't go as well as we had hoped. (Thanks Mom and Dad - sorry about that) While Jordan slept, her brother, dad and I rode Space Mountain and enjoyed the SpectroMagic parade.
It was so much fun and I think we packed in four days of fun into two long days. Randy and I were sore from the long walks and the hours I carried Jordan in my arms when she was tired (yes we had a stroller but sometimes Mommy's arms keep a three year old from falling apart).
Now that I've written so much, I'll now present a review of the view I collected during our adventure. I call it "2 Days of Disney in less than 10 minutes." It runs 7:30 and it was edited using Motionbox so the cuts are a little rough - no dissolves or pretty stuff. But it does show a very busy family in a very fun place!
Jordan had the ultimate princess experience for her birthday... Along with getting sweet and fun princess accessories (a crown and a wand) she also got to get her hair done at the Bibbidi Bobbidi Boutique in Cinderella's castle in the Magic Kingdom. It's as girly as it gets. Little girls come in and can pick the style of hair they want. It's super cute and silly. To add to the silly, my mom bought Jordan the fluffiest, prettiest possible princess dress and Cinderella shoes for her birthday. The final result can be seen here:
If you can't see it here, visit this page.
I know. It's silly. But to add to the fun, Jordan got to have her birthday dinner at a character dinner with all of the main characters from Cinderella - including Prince Charming, Cinderella and the evil step-mother and step-sisters. Jordan ATE it up. The combination of a girly dinner event and the fluffy dress made her so happy. And to build on that happiness, Jordan fell for Prince Charming. She kicked off her "glass" slippers and the prince kindly put a shoe back on for her (picture can be seen in the scrapbook pages above). He even invited her to dance with him after he danced with Cinderella. She was smitten. You can alao see a little bit of that happiness by watching this moment from her birthday celebration at dinner (You'll also see this moment in the big Disney video compilation I'm working on):
Will I ever be able to match a birthday like this? Probably not, but I also don't expect this love of princesses to last forever. She got to absorb the pure fun of it all at a young age... You know, the age when it's still okay to be a princess without seeming stuck up! The experience is all she's talks about - especially "her castle" (you know, Cinderella's castle is now Jordan's castle) and the prince.
How exciting can life get when Santa brings you the princess pajamas, pink camera and pink Crocs you asked for? Well... For Jordan it also meant a chance to go to Disney World for two days! The thrill of Santa was alive and well in my parents' house on Christmas morning. To make the day more beautiful, it was sunny and gorgeous out. So after the kids played with their new toys and took in all of the excitement in the house, we piled into our bathing suits and ran off to the beach. Seriously, how often can you say you played on the beach on Christmas Day? So very cool.
We returned to South Florida for the first time in two years... Two years. That seems so wrong. But when it takes many days to drive and flying is so expensive... I understand why we had to wait. But man, let me tell you. It was a perfect time to be there. The temperature was perfect. We had one rainy day out of seven. We got to swim and enjoy the beach. The kids got to ride bikes a bit. And to top it all off... We got to spend some really great time with my parents and a little bit of time with my brother.
On Christmas Eve, we attended a service at my parents' church. The whole family was actually asked to come to the front and do the Advent candle lighting. Jordan joined me at the podium while I read the meaning of the Advent. At the end, I got her to wish the whole church a merry Christmas. It was sweet -- And it's always cool to sneak in a side of Jordan cuteness.
Gift opening is a big deal for both kids -- But I've always considered a three year old as the "perfect" age for the holiday. You can start explaining the real reason why we're celebrating and a three-year-old isn't greedy enough to be nutty and pig-headed during the gift opening process. It's a pure kind of excitement. I'm not sure if that theory is proven... Cameron has maintained a very sweet attitude - even if he's six and a half. Either way, the gifts are simpler when you're little... And man was every gift exciting to Jordan.
Some very cute things emerged during the holiday season. Jordan LOVES holiday music. She would break out into song when you least expect it. She would start dancing anywhere if she heard a song she liked. She would DEMAND you turn up the song if it wasn't loud enough for her liking. Music and the holidays are a happy mix for this little girl. The best moment was watching Jordan dance to Bruce Springsteen's "Santa Claus is Coming to Town." My mom, Randy and I just watched her boogie while she grooved - she had no idea we were watching. She was dancing for not reason except for the joy that song brings to her. It was such a wonderful and sweet moment.
Another wonderful thing about this trip - The weather was so nice that the television was rarely turned on. Jordan was focused on playing with dolls, bothering her brother and being outside. It was just relaxing and wonderful. Some of the gift highlights: Jordan got a new Leapster!! She recently started stealing her brother's and now she has her very own. It's very exciting.
And now... Some video. First, here's Jordan right before we opened presents on Christmas Eve:
Next, excitement over the present distribution process:
We made it to Florida! We also had a chance to celebrate an early Christmas with Jordan and Cameron's Poppy and Grandma (aka my in-laws)! They had a ball opening gifts. We also got to drive long distances with the kids in the van -- for the first time we had them sitting in different rows with two separate DVD players.
It changed EVERYTHING. Our drive was relatively peaceful... happy and enjoyable. I think we will travel this way from now on. It was too nice. No fighting and relatively few outburst from either kid.
I did figure out an additional way to help Jordan keep up with her toys without them all falling to her left side and she can't reach it. It's a soft tray that attaches with a belt behind her so it doesn't fall down. She was able to play with smaller toys and eat food without losing stuff. I highly recommend it!!
Today we enjoyed a little time in my parents' pool (it was freezing cold) and riding bikes. Jordan was exhausted but we did pull the bike arm out for a little while. Not long enough for her to be willing to let me leave and find a camera. She was exhausted by the end of the day and even fell asleep on the floor. Hopefully she'll get a good night's sleep so we can have a really fun day tomorrow!
I caught Jordan working with her occupational therapist today before we ran off to attend the December graduation ceremony. It's incredible to see how she's able to encourage Jordan to use her prosthetic. The hard part - Jordan won't do a thing with it unless you remind her that it's there to help. We'll get there.
The hard part - we had a snow storm that delayed Jordan's IEP meeting. That's the meeting where the school district will tell us if they can or cannot support us in Jordan's needs for OT and PT. My guess is they're going to say no. But until I hear from them, I can't work with Jordan's current OT and PT folks until I know if I'll get any financial support from the school district, county or insurance company. So until then, I'm going to need to work with Jordan on my own. Hopefully I'll be able to encourage her as well as Linda (Jordan's OT). I'll keep my fingers crossed!
We're heading off on a big road trip - I hope to keep it going here on the blog if a moment is worth blogging about!! Happy holidays everyone!
There's a wonderful website that let Jordan and Cameron record a message for Santa -- and then their message is emailed to me!
Here's what Jordan had to say:
Yeah... We had another big dance performance for Jordan. It isn't the Nutcracker (since we're at a new school now) but it was a great experience anyway. Jordan performed with a local dance studio with the youngest class they offer. She and a bunch of other two-year-olds did a great job. I was really worried about the performance for a couple of reasons: 1) She decided not to perform earlier in the day during a church choir performance. 2) Her ballet shoes weren't in her ballet bag for some reason. Luckily she moved into an excited performance mode once we got to the theater and one of her classmates had an extra pair for Jordan to borrow for the performance. (Sigh of relief)
We had so much fun at the show. To add to the experience, our friend Aurora came to watch and brought Jordan three roses. She let Cameron hand them to her and I wish I had the video camera running. Her jaw dropped in shock. Flowers!!! It was a really cool experience to see. The flowers are in her room to enjoy.
Speaking of enjoy. Here's a little edited version of Jordan's performance for you to enjoy:
If you can't see it, you can watch it here.
Here is a picture of Jordan right before she walked into her new school yesterday. She was so excited. I had a new backpack to give her. She spent all morning wearing it and saying: "I'm ready to go to school!" Her first day in the classroom went pretty well. She played with all kinds of new friends and was so happy to tell me a few things about her day.
From what she had to say, she was happy with most kids but one made her sad. She doesn't know everyone's name yet, so when I asked her who made her sad, she just said "somebody." At this point I have a pretty good memory of names for about half of her class. To make it a little tricky, the classroom has many early education college students working with the kids - so that's another set of names I need to learn! With the semester ending soon, I'm guessing many of them are leaving so that's a little less pressure for me! Jordan's new classroom is a great place for her to learn while college students learn from her. It's a great environment and I'm excited that she's there. The teacher-student ratio is just crazy small because of the connection to the university. There's an observation booth to help researchers and instructors learn and teach. I could sneak in and see how things are going if I want to! The coolest part was ending my day yesterday by just walking over to Jordan's school and walking with her to my car in the campus parking garage. That little perk will be hard to let go of when I end my current fellowship and move back to work more often at the TV station.
Before Jordan officially started at her school, she visited a couple of times last week. On Thursday I went in with her and helped teach the kids about her difference so they weren't confused, scared or just under educated about why Jordan is just like them - just with one hand. I had the teacher read Harry, Willy and Carrothead. It's about how one friend had one hand, one friend had red hair and another friend kept making fun of the redhead. We talked about how the teacher needs glasses to see so that doesn't make her strange, she just needs those glasses to help - and that's exactly why Jordan uses a prosthetic arm (I encouraged the name "helper arm"). Jordan didn't wear her arm that day so I could pass it around for the kids to see. They were stunned and amazed. They had a lot of questions, but mostly to me and not her. One kid asked Jordan why she had one hand and she just said "I don't know." I encouraged her to say "That's just how I was born." Either way, Jordan was more excited about having one of her own books read in the class than the fuss kids were making about her difference. She seems completely not shocked, stunned or concerned about the kids asking questions. I made it clear to the kids that it's okay to ask questions, but it isn't okay to grab Jordan's helper arm or little arm without asking. I saw two kids ask Jordan to show her little arm while they were playing and Jordan was kind to show it off. Then they all moved on and played together. I was really happy to see the kids learn a lot and seem really okay with it. Only one little boy kept saying: "Ewwww. Gross!" The teacher said she'd make sure she talks to his moms to make sure they helped him better digest Jordan's difference. I also left behind a book called The Making of My Special Hand. It gets kind of specific on how a little girl had a myoelectric hand made for her. It shows all kinds of examples of hands and what it takes to get one made. The teacher thinks her more scientific kids will really enjoy that one.
On Jordan's last day at her old school, I got weepy. It's hard to walk away from somewhere you've spent so much time with. I'd have one or both kids in that school for the last five year. Five years. That's the longest I've lived anywhere in my life! Now I've lived here for five and a half years with not plans of moving away. It's a great feeling. But that long connection means it was much harder to leave. Of course, Jordan didn't seem to mind at all. She spent all day Friday telling everyone it was her last day of school. She wasn't sad, she was excited.
Over the weekend, we were VERY lucky to have a visit from my aunt and uncle. I love them both a ton and it's so great to have the kids have fun and play with them. They spent a lot of time playing board games - including Monopoly. I caught a really cool moment when Jordan was sitting on my Aunt Jan's lap trying to roll the dice with BOTH hands. It was so cute. It was also special to be able to have time that was quiet, calm and not as stressful as the last month or so has been with all of my travel and deadlines. It has clearly affected the kids - they're even more stubborn and having a tough time with the word "no." Traditional stuff after a lot of grandparent time. I'll get them back to normal just in time to get spoiled for the holidays. That's okay. It comes with the job of parent. As my mom said: Four steps forward, and one step back. Exhausting kids or not, it was awesome to simply hang out, play games and have fun with my aunt and uncle. Plus, I spent so much time cleaning my house, there is a less stressful feel to it. We'll see how long I can make that last!
Jordan and I had her first transition time at her new school today... and for some reason, I wasn't prepared to help teach the class about Jordan's difference. I bought books a year ago. I've saved dozens of accounts from other parents what they did when they brought their child to a new school. But for some reason I didn't think I'd have to work on this presentation to little kids until elementary school. I guess it's just because I didn't really plan to move her to a new school -- the waiting list to get into her new preschool is very long. I didn't see us moving there. I'm thrilled but a little nervous. I want to make sure these kids learn about Jordan, talk about it and move on once they feel informed enough.
So tomorrow I'm taking Jordan to the school after dance class. I'm going to read a book called Harry, Willy and Carrothead. It shows kids how some people stare and say things because of a missing arm and others get it because of the color of their hair. I think we may also talk about how the main teacher in the classroom has glasses and that's how we consider Jordan's prosthetic. It's helpful! Glasses help you see. A prosthetic help you hold onto things and pick things up and even help you from falling! I hope it goes well.
The kids in the classroom were just noticing Jordan's difference - we wore the bouncy hand. Jordan let the small set of kids touch her arm and she didn't mind. But the greatest thing is the kids stopped asking questions when we told them that I'll be back tomorrow to tell them more about Jordan.
I took Jordan and Cameron to see Santa - I go early because I put together a family calendar every year and this is the last needed photo for the project. Anyway... This is the first time Jordan hasn't cried with the jolly guy. She seemed a little skeptical about her safety at first... but warmed up to him. The funniest moment: When Cameron reminded Jordan not to cry. This has actually been kind of a big deal for the whole last year. I keep the yearly Santa picture on the refrigerator... So often Jordan would look at the picture and says: "It's Santa!! Jordan is sad. I not cry with Santa again!" So... She did a great job.
Can you believe Jordan is only a month away from turning 3? It's mind boggling. In the last month she has turned even more into a strong, opinionated and highly verbal little girl. She is super proud of her new prosthetic. She didn't wear it much this week after we discovered a skin breakout that is healing very well (we'll start using cotton balls at the bottom of the gel sleeve). She had to bring the arm to visitors this week to show if off. While I was away this month, she talked all about what she was doing at school, dance and with her grandparents. We video chatted almost every day. That was really cool. Earlier this month we spent so much time together building her new arm. We're so happy with what she is able to use - three different hands! How cool is that?
With growing up comes big challenges. She and her brother are all about fighting for dominance. There's tattling and complaining. But that just comes with the territory. Other challenges: We're officially in the food fight zone. She doesn't want to eat anything except snacks. It will take a while to get past that. She's also turned up a notch on fighting to go to bed... I actually had to threaten the wrath of Santa last night. (If you actually go to bed, I'll tell Santa you're good. If you keep screaming and crying, I'll tell Santa that you aren't a good girl. Ack.)
Jordan's love for dance continues. She'll start dancing just about anywhere. She loves to sing and she tries really hard to know the words to songs. The down side to leaving her current preschool means she isn't performing in the Nutcracker this year. But she does have a winter recital with her dance school. Thank goodness for that!
This coming month means some big things for Jordan: A new school, a big trip to Florida and possibly a two-day trip to one of the happiest places on earth! (We're hoping Santa says we can go to Disney World... I guess we'll have to wait and see! ;-) )
Jordan is enjoying family time for Thanksgiving... Another year for us all to be very thankful. For one thing, we are lucky to be loved by a wonderful family. We may not all live that close to each other, but we've found so many ways to stay in touch. The kids' blogs are a great way for everyone to know we're doing okay. But each and every family member goes out of their way to find ways for us to see each other in person. Holidays and non-holidays - we've all found excuses to get together and spend time playing with the kids. Randy and I are blessed to have a wonderful work environment. My fellowship has also allowed me to get to know new friends and colleagues. Then there's this growing online world that has offered us so much support and information. I appreciate the comments, emails and connections I've been able to make on this blog, Sammy's Friends, Facebook and Twitter.
We're very lucky and thankful to be so blessed.
I've been out of town for a number of Wednesdays... So I figured I could add an additional picture of Jordan working with her new arm. She has three different hands. This is the one she really needs to work on with her occupational therapist. It was awesome to watch them work together this week and see how Jordan can really catch on how to make it work... She just needs encouragement to use it. During lunch, she was encouraged to use her "hand" to help push her peaches into a spoon. It was a little hard for me to watch. But she's a trooper and I know she'll find a way to make this all work as she grows.
I almost forgot... I was traveling yesterday and didn't get to post this. Jordan's blog was featured on the 5 Minutes for Special Needs website yesterday. One of the writers interviewed me. You can see it here.
But since she couldn't post the full interview, here it is:
Tell me a little about yourself and your family.
I'm 34 and the mom of two kids: a six and a half year old son named Cameron and a daughter, Jordan, who is almost three (12/29/05)! I'm married to my college sweetheart and we are both newsroom managers in Missouri. We also have two dogs that keep our lives even crazier. I work on the tech side of a newsroom and that helped me get really involved in online support groups and build a voice in my blog about my kids. I started blogging when my son was three and a half. I ran a little picture-based website about him for my family ( they live in all kinds of locations - but not nearby ) He was getting to an age where pictures weren't enough, so I looked to blog about him so I could write about the funny things he said. When I was pregnant with Jordan, I started a blog a couple of weeks into the pregnancy... Little did I know it would become a little place to help me grow into a parent of a child with a difference!
Tell me more about child’s disabilities.
Jordan was born missing her left arm just above the elbow... If you look at her you'll probably think she has an elbow - she appears to have tendons that would be connected to an elbow IF she had one. I had no idea about her difference until after she was born. I was actually the first person to notice. It was a special moment with my husband - we looked at each other and were immediately at peace. We knew she'd be okay. The biggest concern I had at first was worrying about how the rest of our family would react. There was a level of disbelief. One family member talked as if a prosthetic could help "hide" the "problem." I quickly made sure the family understood that I didn't consider a tool to be the answer. The best answer would be helping Jordan learn how to be self-sufficient on her own. That was our goal from the start. I certainly have had ups and downs. I mourned the loss of that vision of a two-handed child. I mourned for the loss of our ability to be anonymous. (Hanging out with a one-armed kid makes me very recognizeable) I mourned for my child's challenges -- but as she grew and met her milestones (some in some very non-traditional ways), the more I realized her changes weren't that big a deal to Jordan. She doesn't know differently! This is how she was made and she's figuring it all out.
How did you go about making the decision to blog about them? What do you personally get out of blogging about them and their issues?
I fell into blogging about Jordan because I was already blogging about her before she was born. At first I found it therapeutic to just write about being a new mommy with a cute little baby and the various therapy things we were working on (along with her missing arm, Jordan was born with really unusual low tone issues in her neck and torso - we have no idea if the arm had something to do with it). My challenges with work, feeding and driving all over the universe with appointments were overwhelming. As I went on, the site helped me reach out to other parents of limb different kids and I realized I had a chance to use my blog as an outlet and a touchpoint for other parents in a similar situation. I crave a community. I spent a lot of time connecting with other moms and dads with the help of my blog. I also now help moderate a group called Sammy's Friends (http://www.sammysfriends.org).
What is a typical day like for you and your family?
Life is pretty usual for us. Along with getting ready many days we have to remember Jordan's arm for days when her occupational therapist meets her at school. (We're about to age out of our state 0-3 program and we'll have to go back to driving back and forth to appointments. I'm not looking forward to that) Jordan is still pretty little so I have to help her get ready for school - bathroom and dressing skills are still in progress. A missing arm doesn't really change the day to day on most days. There are times when we have to battle between if Jordan will or will not wear her prosthetic - and these days I've decided to just not fight. I don't want a tool that is supposed to be helpful become something she hates. So she wears it on days she asks for it and she wears it when she is working with her therapist. (We're about to get her a new one and our thoughts may chance while she learns to use it) There are days when I forget her arm and have to race home to bring it to school. We do have to fight wearing shoe inserts to help correct her ankle structure -- her legs and ankles started bowing inward because that's how her brain told her to stand to maintain balance. Her knees straightened but we're still battling the ankles. Jordan doesn't appreciate how those inserts prevent her from wearing many other the shoes she likes. (She's a shoe girl)
How have your child’s/children’s disabilities affected you as a person and as a mother?
What did you do right? What do you wish you had done differently?
I am a totally different person. I kind of feel like I lived an anonymous life and we were placed into a new world. We were chosen to help lead Jordan and our community. When Jordan was little I had a hard time with the stares. I wasn't used to it. I didn't know if I should walk up to the adults and tell them what happened to Jordan. I felt I needed to explain her difference before anyone asked. When I allowed myself to let go of that concern and just live our life, I felt free, like a burden had been lifted from me. I wish I had let go of that sooner.
I am much more understanding to other people with disabilities. I'm also very proud of my family. We don't hide and we do whatever any other family does in our community. Often we end up talking to a person who wants to know about Jordan -- and we explain this is how she was born. Lately Jordan has started talking for herself - simply explaining that she has one big arm and one little arm. It's very sweet. I am trying very hard to not get angry when it comes to talking to uneducated people. I appreciate up front questions. I don't appreciate staring, whispering and pointing.
I am Jordan's biggest fan and I spend a lot of time making sure she's getting the care that she needs - it requires extra time and energy that I never realized I have. I have fought insurance. I have fought the state when they wouldn't let her into its program for kids 0-3. I have that mommy bear mentality when it comes to making sure Jordan can grow and do anything. I wish I had known what kind of support was available to her sooner - I wish I had started looking for PT and OT earlier when she was first born. It isn't that easy to find a good pediatrict PT and OT who have had experience with congenital amputees. (At least in my neck of the woods)
What do you want other parents fighting the same fight to know?
A limb difference is nowhere close to the end of the world. Our kids can do anything and it's amazing what Jordan can do. It's so important to reach out to other parents so we can support each other and our kids will have friends who understand. It's awesome to be able to compare and contrast notes on how we're helping our kids grow and live a wonderful life.
Is there anything else you would like to share?
I would love to continue to build a bigger community with parents of kids with limb differences. I welcome blog visitors (http://bornjustright.blogspot.com) or new members to Sammy's Friends (http://www.sammysfriends.org)!
I got back from China and went straight to work with Jordan! I met up with her occupational therapist to finally show her how Jordan's new prosthetic works. It was incredible to watch how Jordan took to naturally using the "hand" after we convinced her to work on it. (She was a little stubborn since I was there)
It was cool to see what Jordan can and cannot do... Right after wroking with toys, Jordan had lunch and I could see the big challenges she has during that time. Holding the plate, holding a cup and trying to scoop up food like the slippery peaches she was eating today. It's kind of hard to see her deal with a simple challenge like that -- simple to me. Not simple for her. I guess I expect her to fail so she can learn... but man, it's hard to watch her fail. I know she always finds a solution, so I'm not that worried. It's just hard to watch sometimes. I just want to swoop in and help - but she needs to be completely self-sufficient. I know she will be able to do that.
After I took a quick jetlag nap, Randy and I got to go to orientation at Jordan's new school. I got to see her classroom and play with some of the kids in the playground. I met a really sweet boy who is in Jordan's new class. I'm already a big fan. He's already invited me to his house to play. Jordan's room is big with all kinds of big windows. I'll post pictures soon!
The first night I slept in Shanghai I left my phone on... Silly me since there's a 14 hour difference. I happened to notice my phone buzzing and decided to answer it. The person on the phone was from a preschool where Jordan was on the waiting list. Apparently there's a chance for her to attend, but we needed to decide within 24 hours.
But I was in China!! So I needed to contact Randy, chat with him and see if he could set up a school visit. He ended up going to visit the school yesterday with Jordan. He liked it a lot and Jordan warmed up to it near the end of their visit. Randy paid the deposit and we have her moving to the new school in two and a half weeks! Wow. That was fast. So I'm mentally grappling with the idea of Jordan attending a new school. I'm excited but also a little sad to leave a school where we've spent so much time. Cameron started there when he was 17 months old! It's been 5 years! Wow. I'm certain Jordan will be fine. I will miss the teachers and some of the kids... even a few parents!
It's big news for us. The move also means Jordan won't perform in her current school's performance of The Nutcracker. I'm a little bummed about that... But it isn't the end of the world. She does have a Winter recital at her other dance school. I'll get cute photos/video of that instead!
I am wrapping up my second full day in China. I've had a chance to video chat with the kids three times - I'm hoping to stay awake long enough for a fourth. I do get tired earlier in this time zone. I'm documenting the trip in photos... Feel free to follow this slideshow if you'd like to see it all. I've done some touristy stuff and today I experienced shopping and debating over the price of some cool things (I even got a "Prada").
I'm in China and feeling like I've gotten my body adjusted to the 14 hour time difference in Shanghai. All it took was not sleeping for one night and sleeping a lot on my 14 hour flight from Chicago to Shanghai. Nutty stuff.
I'm happy to report I'm here and we were able to figure out how to get Skype's video chat function to work... So I got to see the kids before they went to bed. That was so awesome. The kids were giddy to see me and I have to admit, I was giddy seeing them.
I hope to have some pictures and possibly video later after we play tourist in an hour or two.
I'll leave with this silly screen capture of the kids: