How We Define Success

 

This past year has been challenging for Jude and his health. After COVID sent him into severe metabolic acidosis and hypoglycemia, he battled through two rounds of steroid treatments in 5 weeks to regain his health.  Then, he pushed through a nasty GI bug and four lengthy respiratory infections in 6 months. After all this, together with medication changes and weight issues, it was time to meet with his complex care team.  

In July the team and I reviewed his health since January. We had a lengthy discussion around his six illnesses in six months, each lasting two weeks or longer. Jude had worked hard for years to gain weight, but the doctor saw the up and down of weight gain and loss on the growth chart. I explained that during illnesses when we tried to feed him or get him to drink, he would shove, push and yell.  He simply did not feel well and couldn’t understand why we were forcing him. Knowing that Jude will never be able to understand that he needs to eat and drink, the doctor suggested getting a g-tube placed...again. Those words were deafening. I couldn’t quite process it. Jude and I worked so hard to get him to eat.  He went through so much-surgeries, therapies, pain. How can we be here again? My mind starting racing, I started thinking thoughts I am not proud to admit... “Did I fail him?” “Did I not fight or try hard enough?” “People will judge my decision as a mother.” I cried. I was really upset with myself. I consulted with 15q24 mamas and Jude’s doctors. Everyone agreed he needed it. Even though I knew he needed it their reassurance did not make me feel any better.  

With a lot of thought, reflection and guidance from my therapist and husband I realized I was defining success as not having a g-tube. When in fact his g-tube journey was and is a success. It has created a lot of growth in so many ways. He learned how to eat on his own when he was not expected to.  Then he went four entire years without a tube. Now he will have a tube that will save him from the stress while sick, the hospital visits and will let him show us how he can really eat and gain!  

Though it hurts to think about him going through this surgery on Tuesday and permanently having a g-tube; I am so incredibly blessed to have a son that has taught me to push out the noise and focus on what matters.  Jude, you are such a bright light in this crazy world. I am SO proud of how far you have come and I can’t wait to see what you will conquer next!  

Autism Awareness: The Magic of the Present Moment!!!!

A year ago, I listened to a podcast with Oprah Winfrey and Tim Shriver. Tim Shriver runs the Special Olympics. He described a conversation he had with a mother of one of his athletes. That conversation hit close to home and it is the perfect lesson for Autism Awareness Month.  It went something like this... “One mother told me, she had three sons... Two work at big investment banks and the other has a severe intellectual disability. ‘Every time people ask me about my sons, I tell them about my oldest who is in New York and I tell them about the second who is in Chicago. Then, I tell them about Christophe who is at home and I have to get out of bed every morning. They always say to me ‘I’m sorry.’ She said to me ‘Tim your life’s work is to tell them to stop saying that about my son. That boy is the light of my life and everyone thinks that I should be afraid and sorry that I have this boy. And he is magic!’”

Just like that mother, I have a special son who is the light of my life. Every morning, I get Jude out of bed and ready for school.  We walk down the driveway, hand in hand, waiting for his school bus. When the school bus curls around the corner and enters into sight, his body shakes vigorously with excitement and he runs towards the street. That moment perfectly describes HIS Autism.  Jude is always in the present moment, which sometimes that does not fit the world we live in. He is completely unaware that running into the street could cause him harm. Yet, he teaches me that getting to see his school bus is pure happiness because he will see people who care for him while going for his morning joy ride!  

We may not be able to engage in a verbal conversation with a person with Autism, but we can learn to use a different sense to connect with another.  We may have to follow strict routines to create a world where a person with Autism feels safe and comforted, but through those routines we are able to see how simple daily events can be just as joyful as a child mastering a major milestone.  When we take the time to truly see a person with Autism, we are able to understand that using their strengths and our strengths creates a much stronger and beautiful world.

Autism Awareness month is more than just learning a list of signs and symptoms or posting the newest statistics. It is about taking the time to become aware of the strength, perspective and vulnerability that people with Autism possess. If we all become truly aware of Autism, our world will be filled with magic J

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!

Love, 
Mom

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

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.  Until...one 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!

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!

Love,

Anne and Jude (aka. Peter Pan)

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.