Meet Patrick!

Autism affects 1 in 70 boys - one of those boys is mine......

Patrick Michael Brown, our first child, was born on May 4, 2007. From the moment my husband Jimmy and I looked at Patrick, we were in love... he was the most beautiful baby I had ever seen. I knew that my life would be forever changed and that there was nothing on earth that I would not do to protect this beautiful miracle of ours. Our lives, however, were changed in ways that we would have never imagined.

From early on I felt something was not right with Patrick, but I couldn't put a finger on it. He was a wonderful sleeper, a great eater and always happy -- Patrick was too good to be true! He seemed way to happy and content to be left on his own. As the months went by, we realized he was not accomplishing the normal developmental milestone on time (or at all) that come naturally to babies his age -- how to crawl, how to walk, how to drink from a sippy cup, how to clap his hands - we had to teach Patrick how to do all these things. I was living in a constant state of anxiety.

Jimmy and I would bring our concerns to our pediatrician's attention at each well visit, but the doctor was never concerned. One of the most important lessons I have learned from this experience is to always trust your gut - a mother's instinct is never wrong. You have to trust and believe in yourself because no one knows your child better than you. If your doctor does not listen to you, find another doctor.

When Patrick was 9 months old, I began reading about autism. When I learned the early warning signs of autism, I knew in my heart that this is what we were dealing with. Jimmy mentioned this concern to Patrick's physical therapist (PT) who was treating him for torticollis and low muscle tone. She at first dismissed it and believed he was developmentally delayed. However, by the time Patrick was 12 months old, our PT was concerned enough to ask us to bring this up again to our pediatrician at Patrick's well visit - again, the doctor said it was nothing to be concerned about. It was at this point that Patrick's PT suggested we take Patrick to the Suffolk County Early Intervention for a full evaluation. Their diagnosis was devastating, but finally we had a diagnosis and could begin a course of treatment for our beautiful little boy. Whereas our pediatrician kept dismissing our concerns and ignoring the many red flags Patrick was displaying for autism, our PT took our concerns seriously, and we were able to get Patrick help at a very early stage. So I would urge you to always trust your mother's instinct.

Patrick's initial evaluations at 12 months old showed that he was in fact very delayed in every area of development. It was devastating to read on paper how far behind he really was. As a result of his global delays, at 13 months of age my baby began receiving Special Education, Speech, Feeding Therapy, Occupational Therapy, and continued with Physical Therapy. When he wasn't making much progress, we had him further evaluated by a developmental pediatrician who diagnosed Patrick at 18 months with PDD-NOS which means Patrick is on the Autism Spectrum. I knew going in to the appointment what the outcome was going to be because I had been preparing for this moment since Patrick was 9 months old, but now it was reality. It took me months before I could even say the word Autism. I was living with a constant feeling of anxiety and sadness, but we immediately took action to try to find ways to help our son. A week before Christmas Patrick began almost 20 hours a week of Applied Behavior Analysis (ABA) therapy in addition to the therapies he was already getting.

We immediately started seeing a Defeat Autism Now! doctor. A DAN! doctor uses biomedical techniques to treat children with Autism. Patrick began a casein-free and gluten-free diet and began taking many vitamins and supplements to try and help him heal and possibly recover. While Patrick's progress has been very slow over the past two years, we celebrate ever bit of progress he does make. I try not to dwell on the things he is not doing and try to focus on all the things Patrick can do.

Since we started this journey two years ago, I never imagined how much it could change my life. I am able to appreciate so much more, and I do not take anything for granted. Patrick has brought so much joy and happiness into my life. I admire his strength and his determination to learn. He works so unbelievably hard each day but always remains happy. I am so blessed to have been chosen to be Patrick's mother. He has been given to me for a reason, and I will never stop fighting for him, and I will never give up on him -- He is the love of my life.

Please visit our website at http://www.thebutterflymisison.org/

My Selfish Act

I would like to start off by thanking all of my family and friends for all their support during the launch of The Butterfly Mission.  

I do however feel the need to clarify something.  Many of you have had such kind words to say about me taking on this Mission while still in the process of helping my Mikey, but the truth is, this is a completely selfish act.

Being a parent of a child with Autism, or any special need, you often feel helpless.  You try everything you can to help your child, but in the end you have no real control over the outcome.    What I found was getting involved and helping others in the same situation, has made me feel like I can make a difference and has given me the greatest, “high.”

My first “high,” came when we participated in our first Walk for Autism at Jones Beach.  I remember checking my email constantly waiting for a notification that we received another donation.  Thanks to the amazing support of our family and friends, those emails just kept coming!  With each donation from friends and family I felt like they were joining, “Team Mikey,” and taking part in our fight.  It was an amazing feeling to have all of our friends and family come together to support us.   Then being named Rookies of the year was icing on the cake!  It wasn’t like we were, “high rollers,” running with a few rich friends making big donations; it was lots of friends making donations, to come together for Mikey!   It also reminded us that we were not in this alone; we had a wonderful support system willing to do what they can to help!

The next year we were even more surprised to raise even more money, and have even more friends join our team!  But there was something inside me that felt this wasn’t enough, I needed to do more. I knew our money was going towards helping the cause, but I couldn’t actually “see,” our money in action. 

It wasn’t until Mikey started school, and I was actually exposed to more of the Autism community that I was able to see a need for more help.  Mikey‘s school has a great open door policy which allows me to watch Mikey in class through a one way mirror.  As it is with many schools, funding is limited and they rely on donations for many of their items.   As I watched  Mikey’s class everyday playing with the same toys, I decided at Christmas time to donate a new toy to the class, a gift to the boys in Mikey’s class that were so good to him every day!

I consulted with Mikey’s teacher to see what it was that the kids in the class would enjoy most and we decided that it was time to get ready of the little old wood box they called a kitchen.  I purchased a Little Tykes kitchen for the class.  When I brought in the box with their new kitchen the kids in the class were so excited and happy to see their gift!  The next day when I dropped Mikey off and saw it put together and some of the kids playing with it excited to take their turn, it was just the best feeling.  Of course there were some kids, like Mikey that still didn’t know how to play with the kitchen, but knowing that it was there for them to learn, and for them to be exposed to, was good enough for me!  The icing on the cake, and the biggest high of all was when two of the boys in Mikey’s class brought me a thank you note that the class had made with all of the kids hand prints and their names, it just brought me to tears!  I got to see the difference my small contribution can make first hand!   I instantly thought, “Well I need to do something else, this isn’t enough, I need this feeling again!”

 Since it was around Christmas Time, I asked my social worker if there were any families in need of slightly used items for the holidays or if I could adopt a family to donate presents to.  I found out that there were many families in need at the school, so I brought in boxes of slightly or unworn clothes, and coats, and some house items like dishes and glasses.  It only took two days and EVERYTHING was gone!  They found a home for everything before Christmas and I could not have been happier.  Knowing that I made the slightest difference in these families’ lives, whom already have a lot on their plates having a child with special needs, made me feel like I served a purpose.   My soul felt warm and I felt like I was doing something positive to help these children and these families, and it was all with Mikey as my inspiration.

When I decided to start The Butterfly Mission, it wasn’t just to help others, but it was also to help myself, so that I can feel that high again, every time I reach a family and help them on their journey, and even more so, help a child have tools and resources to help them meet their fullest potential.

I urge anyone who wants to feel the greatest high of happiness and purpose, to choose a charity and help a child (of course I would love it was my charity, but anyone will do!).  There is no greater feeling than to help a child in need, no greater joy than to make a difference in their life.  No matter what adversity you may have going on in your own life, I promise you, the look of happiness on a childs face,  or knowing something you have done, will make a child’s life better or easier,  will make anything you are going through, a million times better!