IEP's, accommodations, oh my!

Ten days has fast approached me today. Ten days ago I left an IEP meeting for Hayden feeling sad, defeated and so worried about our big transition to kindergarten. I worried would Hayden's new teachers, para's and peers love him the same? Is the new beautiful school a perfect beautiful school for Hayden. I was saddened that we had to leave behind Hayden's teacher's and para's who we adore. Who Hayden adores. I left that last meeting digesting the fact we had to talk about a wheel chair and all that meant to our family. What that meant to Hayden. I reached out to friends and even had a very wonderful mama who walks this journey check in on me. My world during that first IEP transition meeting felt defeated. I was shocked to hear those words and still need time to digest those words. Please do not think I oppose wheelchairs. I have met many wonderful adults and children who live a rich and fulfilling life using a wheelchair for assistance. 

What I do not think the therapist or others truly understand is our journey. Hayden has traveled on a journey for five years. We have celebrated and cried on this journey. I also cried and had to accept Hayden needed a walker. It takes time and a ton of emotional acceptance to digest adaptive equipment. I felt at that first meeting all the work and all the dreams we had for Hayden needed to change again. I am not ready to change my dreams just yet. I have big dreams for my son. I hope to continue to use less support and reach more independence. You know what he is proving he wants that too. Hayden wants to walk in stores, he wants to run with his friends, he wants to do things for himself. This is why I am making a choice for him. I am saying no to starting the school year in a wheelchair. I am asking for a try and for everyone to believe he deserves to try. 

School means well, the therapist means well, and people close to Hayden mean well. However, I believe my little boy deserves his chance in his light weight walker he fought to finally be able to use. Today, I feel happy and proud of what I accomplished for Hayden. I am giving him the opportunity he deserves but I am also being open minded this may be our future. For the past five years our future has changed and I know will continue to evolve. I am excited to see what next year brings. I am excited to work with our new teacher and administrators to help Hayden be the best he can be. 

Transition an evil little word

I know every parent wishes their children would remain young. I never understood that before I had children. They truly become your whole world and existence. You would do anything to make the world perfect for your child. I prepared for this transition from preschool. Am I ready no? Do I wish I could keep Hayden with his teacher, therapist, and para that love him? YES!! Reality is transition is happening. In four short months Hayden will be in kindergarten. My first born, my sweet baby boy, my son who has a disability will become a big kid. This mom has many emotions. I know I will be okay and more importantly Hayden will be okay. It does not mean this road we are traveling on for five years has been easy. At times it has been hard, but rewarding in the same breath.

Today was no different than any other day. I woke up knowing I prepared well for this transition meeting. Observations at his new school were completed a few months ago. My letter was prepared addressing what would assist Hayden in being successful. I was pleased to see the therapist and teachers agreed with many of my requests. What I was not prepared for was the conversation of a wheelchair. As a mom of a child with mobility difficulties you wish you could give him your legs and balance. You wish you could make things easier but I cannot. What I can do is be the best mom and advocate for my child.

Just like the day I heard Hayden has delays at nine months or the day the words posterior walker entered my vocabulary I sat. Tears filled my eyes. I have not had time to digest those words. I have not had time to process is this our new reality? Instead those words were uttered to me from an educator who has been through a multitude of IEPs. Someone who has been educated about accommodations, IEPs, 504 plans, and district policy. Her statement was not meant to be hurtful. However, it did just that it hurt. It hurt all over again about bumps we have in our journey.

I like to think I am a good mom, a proactive mom and advocate. I have spent many restless nights researching. I have been through disability training. I met amazing people in my disability training who get it and who understand the road I travel. Why is this topic not easier for me? Why did this hurt? Why am I sad? Why am I angry that our education system still needs an overhaul? Why can't I shake this sick feeling in my stomach. I want to yell it is not fair. I want to say I have been tested now please no more tests. I want to wake up and know Hayden understands I love him. I want him to know I will never give up hope. I want him to know I am doing my very best.

Now as I digest my day I am going to take some time to be objective. I am going to take some time to remind myself we have many accomplishments. I am going to take time to cry. I am going to kiss and hug my baby boy and tell him I am proud of him. I am going to tell him he can be a policeman when he grows up. He can play baseball and he can run. He can chose to participate in crossfit or become a swim super star. Most of all I believe in my little man and I believe I will make the right choice. This choice seems hard now and a shock. Tonight I feel frustrated but I know tomorrow will bring me joy. Tomorrow I wake up to my life a life I would never trade. I have a husband that loves me, friends who support me, family who know matter what will be there and two beautiful fighters. Hayden mommy loves you to the moon and back!

Hello 2013

2013 has gone by so fast I cannot believe it is almost April and this is my first update on our life. So far this year has been a year of inspiration, hope, strength, determination, and change.  Personally those words describe me just as much as my amazing love bugs Hayden and Julia. I started on my new fitness adventure and joined Crossfit in January of 2013.  I started at the Y last year and got serious about my health around November 2012, when life was returning to normal a bit. I progressed my way through various exercise classes Zumba, Spin, Body Combat, Body Pump, and Yoga.  The Y is a bit of a drive for me, so I decided to research gyms locally fast forward I found Crossfit.  I went through a trial and  thought to myself what am I thinking? I left there certain this is not for me. However, I decided to give it another shot and completed my private on ramp sessions and one on one training. I still have days I think why am I doing this but remind myself I have learned to love what it has done for me. The work outs are challenging and they push me to limits I did not imagine I could ever do.  It has helped me become a better me, better mom and better wife. I am officially hooked and truly excited where this new fitness/healthy lifestyle will take me in 2013.  If you think that was my only adventure for 2013 sit tight.  I was fortunate enough to have dinner with some friends I have not seen in years. Truly it has been years! So great to reconnect for dinner, drinks, good conversation, and bucket list commitments.  Bucket list check off-  running my first 1/2 marathon in Disney.  Hello February 2014, I cannot wait to commit and register with my friends Shannon & Aleks if everything goes as planned. Enough about me I know you come to my blog to read about my love bugs.

Hayden has started out 2013 accomplishing many goals. Our biggest is moving to a lighter weight walker. It is smaller, it folds, and allows greater independence at school, home, and in the community. He amazed me only taking roughly two weeks to adapt to his new walker. Now he likes to use it as a weapon to run over things and people :)  He really is all boy! We also registered for Kindergarten. I am not ready for this. I love his teachers and really enjoy my time with my little man.  However, I know he will do great.  It certainly will be a huge adjustment for all of us. I know the school, the kids, and staff will fall in love with him. He is also getting ready for his second season of baseball, which he is overly excited about.  I cannot wait to cheer him on this season! Hayden and I will be running our first 5k together in June with our friends Shawn and Natalie.  I know he will be so excited to compete in his first race with mommy.  We are there to say we did it and to enjoy family time at the beach after our run.  Hayden has also become fond of working out. He likes watching his daddy run and lift weights.  His favorite thing currently is Crossfit. He has red Reebok's that he insist are his Crossfit shoes and he often wants to Crossfit with mommy.  Who knows maybe he will be the first person who has a disability to complete in the Crossfit open. Perhaps he will lead the way in an exercise program for the disabled. We will keep dreaming big because Hayden sure does have big ideas.

Julia has certainly proven herself over the last several months.  She is still recovering from the encephalitis (brain infection) , but she is rocking her recovery. Julia has gained back all of her milestones she lost when she got sick last August.  She is currently working hard on some new skills and challenging her therapist daily.  Julia loves to climb, sing and is trying so hard to walk.  She definitely is everywhere and we do not have any breaks with our little diva.  If there is something to get in Julia will find it.  I am so proud of her and her determination. I am holding on to hope she will make a full recovery. Time has been on our side so far. Julia's personality has really taken off this year. She loves babies, purses, shoes and getting her toe nails painted. All at the young age of 20 months.  Julia is certainly our diva princess who adores her big brother Hayden.

I will try not to let months pass before my next update. Thanks for sharing in my little love bugs accomplishments.

Happy 5th birthday Hayden

Where has all the time gone? Can my sweet boy already be a big five year old. My heart is not ready. Five is so big and five means so many changes. It means going to big boy school, it means mommy trusting you in someone else's hands again all day, it means you are growing up. Just like the year before I have written a letter to my son. I hope one day he will look back on this and know that I loved him and that he is the center of my world.

On December 31, 2007 at 5:33 in the morning I became a mama for the very first time. I felt joyous, fearful, excitement and love that I have never experienced. The kind of love only a mother will ever know. After a roller coaster delivery you were placed in my arms and I knew from that moment my life was forever changed. We spent a week in the hospital so mommy could recover. You and daddy were there taking care of me every single day. All I could think about is coming home and spending my entire life loving you. I dreamt of all the things you would accomplish. I could not wait to just snuggle with you, whisper that I love you, and tell you that you are everything I ever dreamed of my sweet Hayden.

Little did I know that we would face some obstacles in our first five years together. I know we do not focus on your disability much and I wonder if we have made the right decision. But when I look at you I realize I was given a wonderful gift and made the right decision. That gift is a boy that lights up my world. You are funny, you make mommy and daddy laugh every day, and Julia idolizes her big brother. You are kind and so creative. I love that you want to build things like daddy and love baking with me. You open the world to possibilities and acceptance. You are what every little boy should be happy and full of life.

In five years you have given me more than you ever know. You have changed my life. You not only made me a mama for the first time, but you showed me my heart is bigger than I imagined. You helped me see beauty in differences. You helped me become a better person, to want to help and make a difference. You gave me a reason to fight for change. You have shown me that there is no greater cause than to be kind and accepting.

So, my sweet baby boy Happy fifth birthday. I need you to know mommy loves you to the moon and back. I want you to know I am very proud of you. You are amazing and will accomplish amazing things. You make a difference every day and are so strong. You are one of the bravest boys I know. Happy happy birthday Hayden!! I love you!!!

Happy International Day of Persons with Disabilities!!

December 3rd marks a very important day in our house and really for the disability community. Today we celebrate International day of persons with disabilities.  Each year there is a focus for the year and this year happens to be "removing barriers to create an inclusive accessible society".  I will be honest, before becoming a mother to a wonderful boy who has a disability, I did not think enough about the word accessibility. Now, my world is centered around that word and what it means for Hayden. I also think about all the other children like Hayden and the adults living in our society. A friend of mine from Partner's in  Policy making opened my eyes on what it means for adults with disabilities. She spoke of things like getting help at the gas pump or finding vacation spots that are accessible. Little things that I take for granted every day are not always easy to the disability community.

Much of my blog has centered around updates on my little love bugs Julia and Hayden. While I will continue to update everyone on their awesome inch stones I also would like to focus on what accessibility has meant for Hayden. Hayden is in his last year of pre school. This is bitter sweet for me. I love his teacher Amanda, all of his para's and therapists.  Hayden has achieved so much in his two years of school. He is talking so well, playing cooperatively with his peers, and is even walking with the class now.  Huge huge deal.  Hayden uses a posterior walker for mobility, it is large and not easy to maneuver in a small classroom full of kids.  I struggled for awhile hoping that Hayden was using this in his classroom 100% of the time and this year he has done just that.  We were fortunate enough to gain an extra teacher and his classroom was able to be adapted to Hayden. How awesome is that? Hayden is now able to move freely in his classroom in his walker if he chooses. I love that my little boy does not have a restriction to use the one thing that lets him walk freely without barriers.  We are also frequent flyers at AI Dupont Hospital for Children. My little man has rocked walking recently to his evaluations and doctors appointments. Another big deal!  This is a hospital that truly understands the word accessibility. The hospital hallways are large enough for Hayden to maneuver his walker and the examination rooms are equally as large. The best part about the hospital is the accessible playground. I wish every playground was accessible for Hayden. He can crawl on the equipment and play just like every other child. It simply is amazing!  Finally, I have to rave about the sports program for kids of all abilities in the town we live it.  Hayden has participated in baseball and soccer. He loves them both! However, he definitely has an arm on him and eagerly waiting for baseball season.  Who am I kidding he is eagerly waiting for all the high school girls that come to help him play. If anything Hayden knows how to make the ladies fall in love with him.  He will make an excellent boyfriend or husband one day, when he is 30! Now, we just need to tackle educating people who see Hayden in the walker not to feel sorry for him. He truly is a happy little boy. Once you look past his walker you will see just how amazing my little man is.

Finally, I will close this post with a huge thank you. Thank you for continuing to read my blog. Thank you for your continued interested in my children.  They truly are a blessing and hope that they will help just one person or family understand that different is not a bad thing. Different is beautiful, different is amazing, and different is okay!

Who needs a big cerebellum any way!

If there was an award for most valuable patient our family would certainly win. Three visits to AI in one week and one more to go. To say we are frequent flyers is an understatement. However, I would not give up our doctors or this hospital.

This week was a busy week neurology visits and genetics. My brain is in medical overload , but I can honestly say this okay. Tonight I left the hospital with a reason for Hayden's balance instability and coordination. Almost five years and a multitude of test to hear the words uttered to me. Your sons cerebellum did not develop correctly. His cerebellum is small and that will not change. I mean who needs a big cerebellum any way? What I am thankful for is this is not progressive. I am thankful Hayden is going to be just fine. Hayden will always be your best friend and he will make you laugh when you have sad days. Not sure the world is ready for this little man :)

We have also been blessed with our sweet Julia. The nasty HHV6 virus that caused roseola could have impacted Julia significantly. It has not and will not, which is a huge relief. It may take a year for her to fully recover but time has always been on our side. Julia is making great progress and continues to work hard at trying to walk while getting into trouble. She is fond of standing on chairs and climbing on things she should not.

Tonight I will keep it short and sweet. I am sure I will have more news in the coming weeks.

Pure joy!

Wow, I can hardly believe it is November already! November and December are my favorite time of the year. I absolutely love the holidays and everything it represents. I know you are reading this for updates about my pride and joys and I promise I will be doing just that.

First, I will start with updates on my littlest love Julia. We are celebrating two months out of the hospital and being healthy. Huge huge win for our family. Julia has been making great progress in her recovery of post viral cerebellar ataxia. She recently started walking with a push toy for a total of five feet. Hooray! Julia is also clapping and banging toys at midline another hooray! She has become quite the daredevil sneaking up the stairs when we aren't looking, standing on chairs, surfing on her toddler rocker, and standing up everywhere. We also got her microarray results back, normal! Julia is still being followed closely by neurology and will see genetics soon. We just got back today from seeing Dr. Scavina and she is pleased with her progress but is still contemplating steroid therapy. I declined right now because we are heading into flu season and it worries me putting her immune system at risk. Right now we are in a good place with therapy and will add pool therapy soon. I know she is going to adore the pool.

Now onto my main man Hayden. I cannot believe he will be a big five year old next month. He is doing really well in school and loves his friends and teachers. Hayden recently went to the eye doctor and was able to read the entire picture chart. He didn't just read it he used descriptive words and size references. Hooray for preschool and all he has learned! Soon we will venture to his neurology follow up and orthopedics. This includes a new orthopedist who specialized in cerebral palsy. I am eager to meet Dr. Miller. I cannot wait to have someone assist me with helping Hayden become the best he can be. Hayden is also celebrating another important milestone we are finishing soccer! He is going to be so excited to get his soccer trophy on Saturday. Hooray for sports that include all abilities.

I have been seeing a ton of post on Facebook on starting to write down what they are thankful for each day. I think this is a wonderful idea. I am going to close my post today with my first thought for the month.

1. Today I am thankful for a simply perfect Halloween. Hayden and Julia loved every minute.