Sharing information and tools with parents of children with Autism Spectrum Disorders
Saturday, September 24, 2011
My Zumba Addiction
Wednesday, April 20, 2011
Hope and Excitement in the "New"
Tuesday, April 5, 2011
The Birthday Party Invitation....
A Happy Moment at the Party of my baby and me!
Saturday, April 2, 2011
Today is World Autism Awareness Day!
Today is World Autism Awareness Day! For a mother of a child affected this day brings many emotions. I would be lying if I said I am glad this day is here, because the truth is I wish that this day didn't exist, because I wish this disorder didn't exist! That being said, it's here and it does exist, so I choose to use it as a day to spread awareness and show support and honor my son for his strength in this fight.
What saddens me this year, is that as I read different peoples blog posts, facebook status's and tweets, amongst the Autism community, it becomes apparent that even on a day like today, there is a divide amongst us. There are those who do not think this is a day to be celebrated, those who refuse to wear blue because they may not support the organization that started the "blue," and those who are wearing their blue and trying to make the best of this day. There are even people who are trying to re name the day or change the color.
To me, this is not a day to judge each other, as we are all in this battle and struggle together, and everyone deals and copes with things in different ways. You may not agree with how people show their support, or may view it as celebrating a terrible disorder, but if that is how they choose to get through this day, which I am sure no one wishes existed, than why can't we just support each other and help each other through. This is day should not be about the "politics," of Autism. It should be about being unitied together, standing strong in the battle, supporting our families and showing there is strength in numbers.
As I was writing this blog this morning, I was overcome with emotion, by the kindness of a mother fighting a battle of her own for her child, against Spinal Muscular Atrophy. She is a fan of The Butterfly Mission facebook page, and learned about us through a mutual friend. Today, she, "friended," me on facebook, and when I accepted, the first thing I saw on her page, was her reposting our Butterfly Mission post and asking people to visit the sight. This simple gesture brought me to tears. This mother, who has her own battle to fight, took the time today to support Autism. Although our paths our different, our love and support, and determination for our children our the same. This is what today should be about.
Today I will cry, I will laugh, and I will be proud. Proud of all the accomplishments my son made this year, proud of my family and my husband. I will wear my blue (although I would love if the color would have been purple lol), and I will show my support. I will pray for all the children and families affected, I will pray that by this time next year we will have more answers, and even more a cure. And I will be keeping my eye out for anyone else who might be wearing blue today, and I will know they are standing by our side.
Thursday, March 31, 2011
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/