Sunday, August 19, 2018

The year you would of started Kindergarten

Dear Jude,

     Last Thursday, as we waited for your bus, we were joined by the neighbor kids who were preparing for the arrival of their school bus.  It was the first day of the 2018-2019 school year.  This would have been the year you started Kindergarten. I remember a parent of a special needs child telling me milestones, like Kindergarten, can be difficult.
     A few weeks ago, you got on the school bus and continued on the route. Afterwards, I sat on the front porch rocking your brother. Minutes later, your bus drove by, heading to school. As the bus passed our house, I saw you in the window.  You were smiling and looking with delight because you spotted our house. Instantly, I started to cry. Partly because we never got to enjoy slow days when you were baby, like I do with your brother. We spent most of our time fighting past illness and healing from surgeries and procedures. Mainly I cried tears of joy because I am so very, very proud of you. Every day, since you were 4 years old, you climb the big bus steps (with the help of practicing in physical therapy), greet your bus driver and aides with a smile, and ride 30 minutes to school. At school, you’ve learned and are continuing to learn how to communicate, master self-care skills, engage with other students, fine tune your feeding, and learn other skills that will help you become more independent. Most importantly, you greet everyone with your infectious smile and love of life. As a parent, I couldn’t ask for anything more.
     Though I appreciate the sentiment, that the year you would of started Kindergarten could of been difficult, it just isn't for us. As we stood on the driveway waiting for the bus, I stood proudly because you are doing exactly what you were meant to do...with that beautiful smile on your face!


Sunday, October 15, 2017

Choose to Love

Three times a day he works his fine motor skills to put food into his mouth, chew the food and swallow.  Something that comes so easy to most people, he has spent years trying to do.

He happily attends a year round school and five therapies a week to learn basic functional skills.

He continues to make his silly noises and laugh as a passing stranger grows annoyed by his lack of response to her questions.

He continues to practice and strengthen his muscles by climbing the mountain-high bus steps, as an impatient man honks for the bus to move.

He works hard to communicate even the most basic of needs as the stranger misjudges the purpose of his communication device.

He walks down the street screaming with delight as a woman mumbles, “He looks failure to thrive.”

When you are not “typical” to someone else’s eyes, you can become the source of their judgement. Yet, that has never stopped Jude. Some may say it’s because he does not understand, but I know he does. He sees it all, but what he chooses to engage is all the good in his world. He chooses to love: to love the bright lights that capture him in awe. To love music that makes his body move and fill with happiness. To love animals that bring him peace and solitude. To love school and his educators that assist him so he can navigate his world. To love his therapists because they have adjusted his tasks with every new obstacle. To love mommy and daddy because he knows he is always safe and loved.

It is not easy to take this perspective, to ignore all the judgement and struggles, and focus only on the good. Yet, every day I witness a five-year-old who is severely disabled do it. I feel quite blessed I am able to witness such an inspiration in my daily life and I can only strive to be more like him. Maybe we can all learn a little from Jude by choosing to see others with empathetic eyes, ignore the negativity and focus on all the beauty in our life....and of course, to SMILE J

Sunday, January 15, 2017

4,439 meals

   4,440. That is the number of meals Jude has consumed in his 4 years and 20 days. 4,439 of them involved a lot of effort from Jude and a lot of assistance from me.  The first 11 months of his life was the same repetitive attempt...unsuccessfully breastfeed, pump, bottle feed only to end in vomit. EVERYWHERE. Coupled with severe weight loss. This constant vomiting left no other option than daily medication for acid reflux and constipation, gtube placement, and a nissen fundoplication surgery.
    The following year and half was about reintroducing and desensitizing.  Jude had to trust that anything coming near his mouth would not result in him vomiting or being in pain. Every meal I had to pry open his mouth and convince him that this was the best thing ever!!! Needless to say, it was a grueling 30 minutes. After what seemed like 3 hours, an ounce of pureed food would be gone. Obviously an ounce does not fulfill the daily nutrient intake so he would sit for an hour hooked up to the gtube pump. This happened 3 times a day for roughly 547 days, including his 8 hour nightly gtube feed. This routine became exhausting and Jude and I dreaded never ending meal times that resulted in no progress. day it did. He ate 3 ounces of food in one day and that turned into 3 ounces of food at each meal. The feeding team let us drop a gtube feed. This kept our momentum going, yet this increased the amount of food I cooked and pureed, but I did not care! He was eating.
    Over the next year, Jude gained weight, he increased his pureed food intake, and no longer needed his daily gtube feeds. It was time to push him hard and develop skills.  Everyday he worked on chewing, new flavors, and textures. One day, I put a piece of a fig newton in his mouth. The next day, he picked it up himself. Before I knew it, he ate entire fig newton, all by himself! After weeks of watching and being able to confidently say, he can chew...we tried toast with ghee. In true Jude fashion, he used all his new skills and ate that piece of toast! After a feeding team appointment, we agreed he was ready for something more.  January 10th, 2017, changed everything...I made an allergy free sandwich and sure enough, Jude ate that sandwich. He was able to independently feed himself like any other 4 year old. For the first time, we sat next to each other at the table and ate our lunches.
   4,439 meals and a lot of persistence changed everything for Jude. Jude gained independence, conquered his fears and strengthened his muscles. I gained more time to spend engaging with Jude instead of in the kitchen preparing, cooking, pureeing and freezing. Now we can eat meals as a family. Most importantly, Jude is gaining functional skills that will improve his quality of life.  All because Jude never gives up!  Who knows, what he will be doing in the future that seemed impossible today. With Jude, the possibilities are endless!

Sunday, August 21, 2016

An open letter to Ruth B.

Ruth B,

                You are probably wondering why a 33 year old mother from Cleveland, Ohio is writing you a letter. Unknowingly, you have made such a huge and positive impact on my son’s life.  Let me explain…

                In December 2012, Jude was born. It was one of the happiest moments of my life. The love and happiness I felt for my son was overwhelming (and it still is). Days within bringing him home, I knew something was wrong. Eating was impossible and he lost so much weight he was drowning in newborn clothes. Many doctors’ visits and respiratory infections later, including an ambulance ride and hospitalization due to aspiration pneumonia, Jude was diagnosed with a rare genetic disorder called 15q24 microdeletion syndrome.  My world stopped.  The next year and half, Jude underwent 10 surgeries including a nissen fundoplication and a g-tube placement and more ER and doctor visits than I can count.  In addition, he started occupational, physical, speech, aquatic, and feeding therapy. Needless to say, my life was based on therapy, doctor appointments, his medication regiment, and g-tube feedings.  Despite the madness of this unknown world, Jude walked 2 years earlier than predicted, spoke 20 words, and smiled ALL. THE. TIME.

                In December 2014, Jude stopped talking. He stopped looking at me. He lost simple skills he worked so hard to learn. Right away, I called the neurologist because I knew that Autism had moved into my sweet boy’s mind. Ever since his diagnosis, he has made some very small improvements, but most of the time it is inconsistent. He still has not said a word, and boy do I miss that little voice. He still does not make eye contact with most people. He still does not respond to his name. Specialist and therapist have assessed him at 6-12 months cognitively, socially, emotionally, even though he is three and half years old.  There are very few things that interest him, one of those select few being Elmo and dogs.  Recently, that has changed…

                That’s where you come in. The first time I heard “Lost Boy” I was able to relate.  Jude is my Peter Pan and I love when I head into his world that seems parallel to the Neverland you sing about.  Jude will not grow up in the same manner other children will so he is very much a “Peter Pan.”

One night I was cooking dinner and listening to Pandora. As soon as “Lost Boy” started playing, Jude stopped and stared at you singing on the TV.  I stopped and watched him, completely amazed. Ever since that night, he stops every time he hears that song. If he is having a sensory overload where he rubs his head and cries, I sing “Lost Boy” and he stops, looks directly into my eyes, and smiles. If we are in the car and the song comes on the radio, I watch him from the rearview mirror smiling while you sing about Captain Hook. Last weekend, when he was in the emergency room for a g-tube placement, we sang and watched you sing “Lost Boy” so that he would not cry or be frightened.  Due to this new found love for your song, he uses headphones with your song playing to complete fine motor tasks. Previously, he cried and threw objects.  Now he works slowly and peacefully.  I am not sure if it’s the angelic sound of your voice, the tranquil melody of the piano keys, or the meaning of the song that relates so closely to our life…

                All I know is that your song, “Lost Boy,” has created peace inside my son’s mind, opened the door for him to complete simple tasks, and allows me to share that moment with him, as he looks right into my eyes. All I can say is, thank you.  Thank you for singing that beautiful song. Thank you for bringing so much to my little man’s life!


Anne and Jude (aka. Peter Pan)

Wednesday, August 3, 2016

Beating the Odds

Beating the odds. A phrase we say about a person or people who overcome insurmountable obstacles.  A woman with skin cancer goes into remission, a solider who lost his leg in war starts walking again, and even Cleveland winning a Championship are examples of beating the odds. Beating the odds brings hope, strength, and inspiration to all of our lives.
Jude has spent most of his life climbing mountains, only to get to the other side and realize there are five more in front of him.  He spent most of his first year and half of life at the Cleveland Clinic for doctor's appointments, testing, and healing from surgeries. Then, after all his hard work attending five therapies to learn how to walk, talk, and play, Autism slipped in. He went from being a few months behind, to developmentally 6-12 months at three years old. Throughout his first few months of preschool, he missed weeks of school due to anaphylactic shock and hospitalizations due to illness.  By summer, he had made little to no progress for his social, emotional and cognitive development.  
Yet, despite these overwhelming facts, he remains happy and so loving. When many of us crumble over an insanely busy week, he enjoys the adventure. When many of us are miserable because we have the flu, he is happy watching Elmo videos from his hospital bed.  I could write a million examples (and have written a million) of how Jude exudes strength and happiness in some of the most difficult situations. It is easy to smile when everything lays out as we had planned. It is true strength to smile, laugh, and go on about your daily life when those plans are no longer a possibility. He may not have overcome Autism or his developmental delays, but he has developed strength, smiles at the mountains in front him, and keeps climbing. And that is why Jude is beating the odds.

Monday, January 11, 2016

Putting It Into Perspective

       On Wednesday, Jude will start Preschool. He will spend four days a week at school. The process leading to this decision was more complicated than most preschool placements. Meetings, assessments, checklists and other tedious paperwork that all regurgitated the already known facts. Jude is non-verbal, autistic and in the one percentile in every domain.  The information that was gathered led the IEP team to make the decision that Jude's ability to learn and develop would be best in an all day resource room. Before this process started, I knew this would be the placement. Yet, I still felt stressed when the decision was final.  He cannot share with me his thoughts and experiences, so instantly I am worrying about how I would communicate and connect with him after a long day. Scared to think how someone else would react if his g-tube was dislodged.  And an even more overwhelming thought, would someone stay dedicated to his feeding process or would he lose the skills, we have worked so hard to obtain. My anxiety created a dark cloud over my mind and a perception that made it hard to deal with the idea of Jude going to Preschool.
       A few weeks later, I was listening to "The Obstacle is the Way" by Ryan Holiday while feeding Jude lunch. Three minutes and twenty some seconds into the thirty-sixth chapter, I was enlightened by the author's explanation on how the ordinary people, he wrote about, overcame great obstacles. He says they all "First see clearly. Next act correctly. Finally, endure and accept the world as it is." Those words echoed in my mind.  I stopped and sat back in my chair. Instantly, I recalled the day that Jude met his future teachers. The teachers and aides sat in the family room discussing Jude. Halfway through the conversation, Jude walked right in the middle and started hugging everyone of his teachers followed by a slight pat on the back. Almost parallel to the words of Ryan Holiday, he saw the situation clearly, three new people to love him and acted correctly by hugging every single one. Then, Jude endured and accepted the world as it is, by giggling, smiling and running around all of us. In that moment, sitting in the chair and hearing those words, I realized that I was looking at it all wrong.  Jude will give every situation everything he has and overcome by exercising a positive perspective.
       Wednesday, I will drop Jude off at school and I don't doubt for a second that he will flourish. My stress and anxiety have turned to hope and excitement.  Even though, everything is not the way I had expected or intended, Jude will overcome and be stronger for facing obstacles that come his way with a positive perspective and that unbelievable smile!

Tuesday, September 22, 2015

The Power of a Parent: Conquering Guilt


        Guilt is a dark shadow that creeps into our minds and hides while we are overcome with our own self-inflicted burdens.  Unfortunately, every human being experiences it. Once a parent holds their child for the first time, they become engulfed with the love they share. At the same time, while you are basking in the joy of your new child, the weight of guilt starts to settle in and you can feel the entire world resting on your shoulders. Not soon after your child is born, you ask yourself a million questions. "When will he roll over? Should I be practicing rolling techniques?" "Is she suppose to be sleeping through the night? What did I do wrong?" The questioning of your own ability as a parent continues into different avenues. Over the years, making a decision about daycares, schools, friends, and extracurricular activities can be completely overwhelming. Parenting a special needs child can take guilty feelings to a different realm of questioning "What if I caused these struggles?" "Am I doing enough?  Will he every talk, walk, or eat?" The constant banter of guilt can consume your thoughts. 
        Last month, Jude and I were in our normal Wednesday routine of speech, feeding, and aquatic therapy.  We had an hour and half time lapse until he had Young Athletes practice. Due to the lack of time, I headed to the grocery store.  I parked our car under a shaded tree in the back parking lot. Once I was settled into the backseat with Jude, he ate his purred dinner and completed his medication regiment through the gtube. He quickly fell asleep. In hopes not to wake him, I crawled into the front driver's seat. Without any warning, my eyes filled to the top with water and in an instant it all came splashing down onto my face. Feelings of sadness and guilt enveloped me. All I could think was that my two and half year old never gets time to play on a playground, play with friends, and explore at home. Instead, I am feeding him dinner in a parking lot because his day is so busy and we do not have time to stop at home.  The past two and half years have been filled with doctor's appointments, six therapies, twelve surgeries, and more sickness than I care to remember. If I don't take Jude to physical and aquatic therapy, he may not be walking.  If I don't take Jude to occupational and speech therapy, he may not develop safe sensory input or learn to communicate with anyone. If I don't take Jude to feeding therapy, he may never eat solid food or feed himself. Slowly anger took over my emotions. Why is this the life for my fun loving, always curious, sweetest boy in the world? Why can't he just play or run outside? Many times, I place this unnecessary blame on myself.  I took a long, deep breath and dried my tears.  In the rear-view mirror I could see Jude sleeping so peacefully. I decided to consciously remind myself that, even though I do have to take drastic measures for Jude to learn functional living skills, those decisions have supported Jude in beating all expectations.  Most importantly, Jude has remained so happy because he knows he is loved.
        Every parent has crucial and gut-wrenching decisions to make for his or her child. Making decisions on what Jude needs can be life threatening, imperative for his development, and emotionally exhausting. Some days, I wish I could fix everything and just let him play at home.  On the other hand, when I observe Jude I know the guilt is unnecessary. He reminds me that he is happy with his life by tight hugs in the morning and big smiles as he is racing into therapy.  It makes my guilt of  his not "normal" childhood melt away.  I know it won't be the last time I feel guilt, but I know now the best way to overcome my guilt is watching Jude flourish...and of course, soaking up all of his smiles!