My Zumba Addiction

I am going to start this post by saying, I never liked working out, never liked sweating and never stuck with an exercise regime for more than a month (and that was before my wedding so not sure if it counts!)

A few months ago I was complaining to my husband (yet again,) that I feel like I am always tired and have no energy and feel out of shape.  My husband said for probably the 1000^th time that I should really start doing some exercise that it would be good for my mind and my body (I have never listened to him because he loves working out, blah!).   This time since I was so desperate to feel better I figured I would give it a try and since I love to dance, I decided to give the new Zumba craze a try. 

I started with one class at a small place since I didn’t want to invest in a gym membership with my history of one week and done.   The place was very small and in the class was only my Mom, me and two other people.  I thought it would be easy, hey I am Puerto Rican and I can dance! lol.  Boy was I wrong! I never felt so awkward and out of beat in my life.  There were a few times during the class when I had to hold back my laughter when I caught a glimpse of myself in the mirror.  I felt silly but I didn’t care, it was fun and for that hour I didn’t think of anything except trying to keep up with the instructor.  I enjoyed the music and the sweat, I felt like I was in a club in the middle of the day.  I decided that this is something I would be willing to give a real try.  I joined a gym close to my sons school that offered Zumba classes daily.  I went to my second class and I was hooked.

Rewind to April of 2009 after my son was first diagnosed and I was sitting in the waiting room of a  DAN’s office.  I was in my sweats, no makeup, anxious and nervous.  A mother walks in with her son who was about 5 or 6 years old.  She is all done up, heels on and well put together.  She had definitely been there many times  and knew all of the receptionist.  She begins chatting away with the receptionists and her son keeps asking her for a snack which she keeps denying him since there is no eating in the office.  You can see the son wants to get her attention and it becomes clear to me that he too is on the autism spectrum; however she continues to talk to the receptionist.  The receptionist compliments her on her hair color and she tells them how she loves to change it up and is always getting a different color or cut.  She is telling them about being out at a bar the other night and how much fun she had and how she fell in her new heels while she was there.  As I listened and watched her go on so matter of factly I was completely taken back.  I thought to myself, "is this mother crazy?"  How does she care about her hair or her shoes or going out, her son is sick!  I could barely bring myself to do my hair and here she is talking about going out having fun and her shoes!  At this point I could not imagine going anywhere without my son and how would I be able to have any sort of fun knowing the fight my poor boy has ahead of him.  The Dr. came out and called me into the office and by then I was already on the verge of tears and was so thankful to get out of that waiting room and away from that mother.

The reason I share this story with you, is because at that moment, I never thought I would be here in this one.  I never thought I would want to or be able to do something for myself again, something to make me feel good, because to me at the time I thought that mother was so selfish to be thinking of her own fun.  After many tears and much time has passed I come to realize that coloring her hair and buying her shoes was her Zumba, her thing she did for herself, her thing that made her feel good.  Today I feel guilty having ever judged this mother as now I know we all need to have something for ourselves, an outlet to forget about the stress and worry of everyday. 

Although I happily revolve my life around my family and helping my son get better, when I am in my Zumba class I have an hour to myself,  an hour of not thinking, an hour of not worrying, an hour of letting things go.  There has been many a class that while listening to the music and doing the steps I have an overwhelming feeling to cry.  On occasion I almost have, but I fight off the tears and keep on the steps and in the end I feel so much better.  I don’t know exactly why this happens to me, and I am no psychologist, but maybe it has something to do with being there not thinking and just feeling, my emotions from the day or week come out.   The best part is I work through it, I jump higher dance faster and in the end I feel better and that need to cry is gone and replaced with calmness.  I leave feeling lighter, happier and I know this only makes me a better wife, and a better mother.

So my message to all of my Autism Mommies out there, find something to do that is just for you and don’t feel guilty about it!  Making time for yourself, even if it’s only a half hour a week, in the end it will only make you a better Mommy.  To the Mothers of the newly diagnosed, I know right now you can’t imagine making time for yourself, or having the energy or the drive to do anything, but trust me you will get there and things will get better.

I would like to give a special THANK YOU, to the Zumba instructors that have helped me find an outlet for myself, Claire from Synergy in Syosset, and Sue and Michelle formerly of Sportime in Syossett.  Thank you from the bottom of my heart!  You have no idea what going to your class has done for me, it has provided me with an outlet to recharge and to be a better Mommy.

Hope and Excitement in the "New"

Being the parent of a child with Autism means you have to do whatever you can to try to solve your child’s “puzzle.”  Each child is so different and there is no one identical treatment for all, so you have to be willing to try new therapies, new treatments, and unfortunately go through some disappointments, until you find the formula that works for your child.  The one that will make your child be the best they can be, and meet their fullest potential. 

Since our family is only 2 years into our journey with Autism, although we have tried quite a few treatments and therapies, we still have much to try and learn.  I know there is still a lot more in my little man that he is not showing us! 

I have read lots of stories about children with ASDs whose parents have tried a new treatment that helped them turn a corner and had a dramatic affect on them.  I recently spoke to a mother at my son’s school who stopped giving her child casein and immediately was amazed to hear him speaking more. I’ve read of diets and supplements that have helped children focus, and not stim as much.  Some parents have been blown away by how well their child has responded to Applied Behavioral Analysis Therapy and how quickly they have gained skills and make improvements.  I’ve read countless stories of parents amazed by the dramatic affect a diet or supplement or treatment has had on their child.   I still wait eagerly for this jaw dropping experience that something new will make a dramatic change for my son. 

I remember when Mikey was first diagnosed with Autism, and being told about ABA and how much this therapy will help my son, that in a year I was going to see such a dramatic change in him.  I was so hopeful and excited for that year to pass, so I can see all the progress Mikey would make. Unfortunately, the year passed all too quickly and I was left heartbroken and disappointed that Mikey’s’ progress was not as dramatic as I thought it would be.   When we started the gluten free casein free diet 2 weeks after Mikey was diagnosed, I watched every move he made carefully, and listened to ever sound, hoping for some words, hoping for a difference, but again was left disappointed.  I can go through the list of things from a new dog, to NAET, to the hopes of what school would do for him, but in the end they all left me with the same feeling, the disappointment and knot in my stomach, that, “ok, this didn’t work like I hoped, now what?”

Mikey has made slow and steady progress along the last two years, although I am happy he is moving forward I yearn so desperately for a burst of progress, something dramatic, something that will make me cry and shake with joy.  So we move on with hope to the next thing on our list to try, the “new.”

We are currently experiencing hope in the new as Mikey has some changes going on right now.  Last week we started giving Mikey Methyl B12 shots.  Methyl B12 is a supplement that has had a dramatic affect on some children with ASDs and has been known to increase language and focus during learning times.   I am keeping my fingers crossed and heart open, and praying for some big results.  Although, I probably tread a little more cautiously these days.

Another very big change that will happen after spring break, Mikey will be starting in a new classroom with a new teacher, one that is a better match for his needs.   Although I am nervous about how Mikey will react to his new surroundings, I am so excited for this change.  It is so very important that children like Mikey have a teacher that knows how to teach them, the way that they learn.  Let’s face it, with all the changes in diet and supplements that might allow these children to be more focused and aware, it means nothing if they don’t have the right person teaching them!  I am hopeful that this teacher will make an impact and difference in Mikey’s life.  I wonder if she knows how much I am counting on her to help our son?  If she realizes how I prayed every night that my son would get into her class because of her great reputation?  This is a new chance for Mikey, an opportunity to meet a teacher that might be the one that, “gets him,” and can reach him, to help him learn and grow.  I am most excited about this change, this fresh new start, and I only hope that this time next year, I really will see a huge difference, and will be amazed.

When it comes down to it, if these new things we are trying aren’t what produce the best results for Mikey, yes, I will be disappointed, but I will NEVER GIVE UP!  We will keep on going, moving on to the next thing until we find the right formula for Mikey.

Unfortunately, this is the life of most parents of children with ASD’s, we are desperately trying to help our children.  We are on a roller coaster ride of triumph’s and defeats, a ride that we didn’t buy a ticket to!  Most of the time, we have to do it at our own expense since insurance companies do not cover much of the treatments and therapies. Doctors expect us parents to accept the answer, “there is no cure.”  But that is something no parent should ever accept!  We pray for more and better research to find a cure or to find a way to help our children live a normal life, where they can be independent and have a job, a family, and be happy.  It’s sad that approximately 1 million people are diagnosed with an Autism Spectrum Disorder in the United States, and there is still not enough research, still not enough funding or support, and still no answers…

The Birthday Party Invitation....

When a birthday party invitation comes in the mail for most 4 year old children, it’s an exciting thing.  Parents might be happy to have something to do to entertain their child on the weekend, and children wait in anticipation for a chance to run around with their friends, and eat birthday cake.  For our family and probably for most families affected by Autism this isn’t the case. 

When a birthday party invitation comes for Mikey and I show it to him, he has no idea what it means, to him it’s just a piece of paper that he doesn’t know what to do with it.  When I tell him that we are going to a child’s birthday party, there is no response, no smiles, no excitement, because the truth is, he probably has no idea what I am telling him.  It’s similar to telling an infant baby that they are going to a birthday party, they have no understanding of what you are saying, but you tell them anyway in the hopes that one day they will learn and understand.

For me opening up a birthday party invitation is usually a cause for anxiety.  I immediately check to see if the location has a website to see what kind of place it is, and if I think Mikey may possibly find something to do there.  I start to wonder how many children will be there, will it be too loud? Will it be too crowded for Mikey? Will he be able to participate in any of the activities and have fun like the other children? Or will it be too advanced for him and will be he left to watch his dvd’s in the corner with Mommy and Daddy?   

Although we have anxiety about taking Mikey to these kiddie places, we always try our best to go, if we think there is a chance he may find something he likes, we try to give him the opportunity to be exposed to different situations.  We keep our fingers crossed that it will go well, and maybe just maybe he will have fun, and make a connection, or try something new. 

This weekend Mikey had his first birthday party in quite some time (besides his own which was a pool party and he loved!).  We had been invited to a few at the end of last year that we couldn’t make, so we were unsure how Mikey would re act to this one, now that he was older with new skills.  It was the child of dear friends, so we were happy to be there to celebrate and see some of our friends and family.  In the Autism world, Mikey would probably be considered to have some strong social skills since he makes beautiful eye contact when meeting new people, he will smile and wave, and if it’s a blonde woman will probably try to give her a kiss!  So we were hopeful that the party will go well.  We knew there would be familiar faces there for him, and when we looked on line there was a slide we thought he would like (although we didn’t realize that he would have to climb through a huge maze to get to it!).  Plus, it was a two year olds birthday party, so we figured things would probably be age appropriate for Mikey who is so delayed.

When we got to the party we were pleasantly surprised, Mikey broke free from my hands to climb up a inclined mat, up to a cushioned platform that was under a little roof almost like a tent.  Mikey loves those mat’s (the ones that look like gymnastics mat’s), so I thought, ok, they have matt’s so we should be good!  We said hello to a few people and Mikey was laying on the matt smiling.  Mikey’s Nonni was there on the other side of the party, so I picked him up and took him around to see her and say hello.  That’s when things changed quickly.

As I carried Mikey through the party with all the kids running around and the music blasting, I can feel Mikey start to get nervous and his body tensing up.  His smile quickly faded.  When we got to Nonni, he gave her a kiss as I asked him to, and when I put him down on the floor he took off running towards the nearest bench and started to cry.  He didn’t know where to go or what to do, I can see the desperation and confusion in his eyes as he ran back and forth flapping his arms.   I immediately ran after him and asked someone to get my husband who was chatting with his friends.  I sat down on a bench with him and made sure he had his blankey and his binkie.  I took his iPad out to play a movie for him.  My husband came and we took out juice, cookies, a ball we brought for him, anything we can find to try and calm him.  I sat next to him on the bench and held him.  He began to calm down a little bit, but I can see him looking around at all the people taking it all in.  Of course all of our family and friends were concerned asking if he was okay.  I tried to make excuses for his behavior, maybe he is tired, maybe it’s his stomach, but the truth is I didn’t know, I couldn’t ask him, he couldn’t tell me if the place was too loud, or if it’s too crowded for him, or maybe he just didn’t like the lighting, he has Autism, that is all I know. 

He didn’t stay calm long, he wanted to get down, from the bench but didn’t know where to go and started to cry again.  My husband and I took him outside of the room to a little hallway with it’s own cushiony bench and Mikey quickly calmed down.  He climbed up on the bench laid down with his blankey and his binkie and started to smile.   He found his spot, a quite place with a comfortable seat with no one around except Mommy and Daddy and now he was content. 

I could see the disappointment in my husband’s eyes, although he smiles at Mikey and calls him a little stinker and tells him how cute he is, I know that he wished more than anything that Mikey would have done well today, so did I.  I know my husband wanted to show off his son to all his friends, and show them how well he was doing.  He wanted to watch his son have fun with the other kids going down the slide and climbing through the maze, but instead, we were in the hallway watching our son have fun laying on a bench.    

The food was served and we decide to take Mikey back in again.  I saw the worry and concern in my mother in laws eyes when we got back in, I knew the concern is probably more for my husband and I then it is for Mikey.   My husband served himself and me a plate and I sat Mikey down next to me with his movie again, I was able to scarf down a quick plate before he became upset again and we were back in the hallway.

Since most of my husband’s friends and family were there I told him to go in and I would wait outside, a little while later my husband was back in the hallway telling me to hurry up and bring Mikey in that he was going to take him down the slide while all the kids were still sitting down eating!  While he was inside  my husband (his is by no means small!), had done a trial run climbing through the maze to get to the slide, to see if he could fit and take Mikey up! So we snuck back in and went to the maze, my husband helped Mikey all the way up the maze and to the slide. Mikey did great, my husband was so happy!  He was determined to bring Mikey down the slide at least once!  They got to the top sat next to each other, each on a slide and held hands coming down!  Mikey did great!  He got a little nervous towards the end because the slide was much faster than he was use to, but he didn’t cry and he made it down!  I picked him up and we quickly ran back to the hallway before the kids came back!  My husband was thrilled and so was I!  I was so proud of both Mikey and my husband for making the best of the situation and finding the joy in a stolen moment and a slide!

We came home that night exhausted and happy to be home.  Mikey was back in his safe place,  happy and content.  While I was lying in bed with Mikey that night, he fell fast asleep, and I took to my blackberry as I always do to check my emails (I have a slight blackberry addiction!). I was surprised to see an email from our friend whose son’s party was that day.  I opened it up and she had thanked me for the gifts, and then she wrote something that made me feel so much better.  She said “I know it’s not easy for you and really appreciate you taking the trip.  You’re a great women! Mikey is so wonderful. I love him.”   This email so simple and kind made such a difference to what happened that day.  I knew that our friends “got it.”

 As a parent of a child with Autism, I sometimes worry that when we do get invited to these parties and if we don’t go that our friends might not understand why, or what it is we are going through, or think that we are being anti social or over protective.  After reading her email, I knew that she understood what it meant for us to go, and understanding is something that every family affected with Autism appreciates.

Now to all of my friends who may read this and say maybe we shouldn’t invite them to our next children’s party, please do not feel that way!!  Please keep on inviting us!  We may not be able to make every party, because bottom line is, at times it may be too much for Mikey.   All we ask is for patience and understanding, and know we ALWAYS want to come, and just because this time he may not be ready, we know someday soon he will be!  So please don’t give up on us! 

A Happy Moment at the Party of my baby and me!

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.

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! 

Meet Mikey!

Michael Patrick MacPherson Jr. was born on February 18, 2007 at 2:30pm.  He was a week past due and had to be delivered by c- section.  My husband and I joked at the time that he was a Momma’s boy already and just didn't want to leave his Mommy’s womb. Although he was born “Michael,” he was instantly dubbed, “Mikey,” which was a perfect fit for our big baby boy, (8lbs 12oz and 22 inches long!).  From the moment he was born he was the sweetest most loveable baby.  He only woke at night to eat, (which was often since he was always hungry), and never cried for anything but his food.  He was always happy and content, and so were my husband and I.  We were blessed with a healthy, beautiful baby and we couldn't be happier. 

As the months passed, Mikey seemed to be a normal baby boy, always smiling and just enjoying life, I knew he was special, you could feel how good and sweet he was just being around him.  His smile was contagious and anyone who came in contact with him was instantly in love.  He was a chubby boy with lots of adorable rolls in his arms and legs and the cutest round face you can imagine. 

Being first time parents, my husband and I didn't really take notice of missed milestones and we always blamed it on the fact that he was a big boy.  He sat up for the first time at about 6 months, he never crawled, and he would scoot on his bottom to get around, (which we just thought was the cutest thing.)  He would make a lot of noises but didn't put many sounds together.  The months went by quickly and we spent them enjoying our Mikey and soaking up every moment we could with our son.

It wasn’t until his 15 month check up that his doctor began asking me routine questions about his development that I started to realize he was delayed.  At 15 months he had no words, didn't walk, didn't pull himself up to stand and never crawled.  When the doctor heard all this he immediately told me to contact early intervention and have him evaluated.  Of course I called right away however, I wasn't too concerned.   I thought there is no way my child has autism or anything, he’s so affectionate, he didn't line up his toys, or spin them, (which at the time I thought autism meant all these things), and although he flapped his arms when he was excited, we felt it was something cute.  We had done all the, “right things,” we separated the MMR vaccine, we only gave him organic products and only used natural organic cleaners in the house, and we had four nephews and two nieces, none of which had any learning disabilities.  We blamed his delays on him being chubby, and boys are always a little delayed. 

After Mikey’s evaluations he was immediately approved for Physical Therapy, Speech Therapy and Special Education services.  None of the therapist or evaluators seemed alarmed, so neither was I, we figured, just a little extra help to get him caught up.

Mikey finally began taking his first steps at 19 months and my husband and I were thrilled, just proof to us that he’s just taking a little more time to do things.  Right after that he began crawling so everything we thought was going to be just fine.  Although, physically he was catching up, he still had no progress with his speech, and his special education teacher said he didn't really like many of the toys and wasn't showing much interest. 

It was November 2008 when his Physical Therapist first mentioned having him further evaluated, this is when I began to become more concerned.  I had told her that I was concerned that the other therapists were giving Mikey too many things to play with at once, and that he seemed overwhelmed and they didn't give him enough time to figure the toys out before putting another one down in front of him.  She then mentioned something called Applied Behavioral Analysis therapy (ABA), which would be more structured and that may work for him.  I was thrilled to hear there were some other options for us.  She then told me in order to receive this therapy he must have a diagnosis of at least Pervasive Developmental Delay (PDD).  I didn't know much at the time about it, however how she explained it was that it was on the Autism spectrum and it can get him this great therapy.  She also said that if he gets the right therapy he can lose this diagnosis by the time he gets to school. 

Immediately I googled PDD, and was in tears when I began to read more about it.  When I read the signs I started to realize Mikey didn't always answer to his name, and that he had no interest in playing with his toys and would much rather watch a DVD; he wasn't pointing to request or to show me anything.  I also thought this can't be right because my son is social, I could take him anywhere and he was happy and content, he transitioned so easily and was always happy, never had a tantrum.  I was hesitant to have him evaluated, I thought, maybe I didn't try to teach him enough, maybe I let him watch too much television, if I could just have a couple of months too really focus on showing him to point and teaching him to play with his toys that he will be just fine.  As a first time mother I felt that I didn't know he had to do all these things and that because he was always so happy and content maybe I didn't engage him enough.  I promised his therapist that if there was no improvement by the new year, I would have him evaluated.  I decided at that point there was no need to concern my husband or family with this information because everything would be fine, I just needed to work harder. 

For the next two months I diligently worked with Mikey, tried to read books with him, teach him his body parts and how to point, and then I began to notice his avoidance, and how he wouldn't look at me when I tried to do something he didn't like or understand.  The holidays passed and I scheduled his evaluation now with the hopes that it was a PDD diagnosis so that he can get this great ABA therapy that can help him.  I let me husband know about the evaluation.  Still at this point I saw PDD and Autism as two completely different things and I did not think my son had autism, to me it wasn't even a consideration, and I assured my husband that he would not have an Autism Diagnosis.

On January 30, 2009, a psychologist entered my home for Mikey’s evaluation, and at 1:30pm after a half hour evaluation, she told me my son had autism.  It was like I was punched in the stomach.  Our world changed forever.  I broke down in tears, I was shocked, scared and confused.   How did this happen?  We did all the “right things.”  This can’t happen to my sweet, loving boy.  I now was faced with having to tell my husband, who I had assured there was nothing to worry about, that in fact our son did have Autism.  My husband and family were devastated. 

I immediately began researching.  I read every book I could to find out whatever I could about autism and what I can do to help my son.  I learned quickly that Autism was not at all what I thought it was.  Of course, Jenny McCarthy’s book was the first one I read.  Although our story wasn’t the same, I found it inspirational, if she can recovery her son than I can too!  Mikey was on a gluten free, casein free diet by his second week, and it took about three weeks to form his ABA team.  All the information I took in was overwhelming and with so many different therapies and no definite answer, I was still left confused, however I was eager to begin our journey to getting him better. 

My husband and I took turns crying, me mourning the dreams I had for my, “perfect,” son, the dreams of him being a lawyer or a doctor, getting married, having grandchildren; my husband mourning his football player, who would be popular with the ladies.  Now we were faced with a future of uncertainty.  We had no answers, no guarantees, now we wished for language and for mainstream classes instead of honor roll.

I continued to search the internet and message boards diligently to try and find someone with the same story as us, someone that had success helping their child, so that they could tell me what to do!   Many of the stories I found were that of children who were developing normally, and then went for their scheduled vaccine appointment, and suddenly changed overnight losing language and skills.  This was not our story at all, and it frustrated me to not find someone, with “our story.”  I felt like if I just could find one child that was just like Mikey and ended up being fine, then I would know that Mikey would be fine too.  What I learned quickly is that each child with Autism was so different, and that there was no one formula to help them.  This meant we had to try EVERYTHING and ANYTHING to help our son, until we find the right, “formula,” for him.

 

One day, after months of crying, my husband came home and found me yet again in tears.  He looked at me and said, “Get it out now, because this is it, we need to stop crying and we just need to act.”  After that day, we made a joint decision that we weren’t going to mourn anymore.  That we were going to work hard and try everything to help our son, and most importantly we would begin celebrating him for the happy, special, little person he is.  That year joined the walk for Autism Speaks on LI.  Our whole family came together that day, wearing Team Mikey Jr. t-shirts and celebrated our son.  We raised over $9,000 our first year walking, and were awarded rookies of the year!  It was a good feeling to know we weren’t just sitting home crying anymore, that we were taking action to help our son, as well as raising money to help the Autism Community. 

Now, don’t get me wrong, we still have our moments when we breakdown in tears, but they are much less frequent.  These days, we celebrate everything Mikey does, every accomplishment, every birthday, every smile.  We use Autism Awareness day as an excuse to get together with friends and family and celebrate Mikey and all of his accomplishments.  When Mikey is happy, we are all happy, and Mikey is happy a lot!

Today he is still our special little boy, happy, loving, and with a contagious smile.  He loves bouncy castles, balls, fish, the pool and taking walks outside.  He is definitely a ladies’ man, with a preference for the blondes!  His favorite place to be is on the beach, watching the waves and trying to jump in!  Mikey is our joy, our happiness, our inspiration, our teacher.  He has taught us how to celebrate life and we feel blessed every day that he is in ours.  He has come a long way in his therapy and now his schooling, but we still have a long ways to go, and we wait eagerly for him to find his voice.  We move steadily down the list of things to try (even tried a dog, that didn’t go over very well ;o) ). 

We move forward with hope, faith and belief that in the end Mikey will be as “normal,” as the rest of us.  As we start a new journey with The Butterfly Mission, we hope to help not just Mikey be the best he can be, but as many children and families as we can. 

How the Butterfly Mission Began..

 

My name is Christine MacPherson and I am the proud mother of Mikey, a three year old, non-verbal boy who was diagnosed with Autism on January 30, 2009, at the age of 23 Months.  Mikey is my joy, my love, my greatest blessing, and my greatest teacher.  I will share more details of Mikey’s story on future blog posts, the purpose of this entry is to familiarize you with the Butterfly Mission, how it began, and what I hope to accomplish through it.                 

I began The Butterfly Mission so that I can share information, tools and resources with families on the same journey as Mikey and I, as well as raise awareness.  The primary purpose of The Butterfly Mission however, is to raise funds for families affected by Autism so that they can help their children meet their fullest potential.  Although, "science," makes the claim that there is no cure for Autism, through the use of various treatments, significant and extraordinary progress is possible.  The tools we hope to provide range from sensory equipment, to educational seminars for parents and teachers, grants for biomedical treatments, IPAD’s for communication and everything in between.  We will also provide grants to school programs that help support and educate autistic children and their parents.  

Even more imporant the having the right tools and resources, is the ability to “Believe” that such progress is possible, the principle behind the Butterfly Mission.  As families take advantage of  all the available treatments and resources which become available to them, they can empower their children to be meet their fullest potential and be the beautiful butterflies they were meant to be. 

Why A Butterfly and What’s in the name?

As a mother of a child with Autism, I found myself eager to get involved with my son’s education, and autism charities, so that I can help him and children like him.  What I found was looking at a puzzle piece as a symbol of autism, although it may be an accurate representation, was not a hopeful one.  The puzzle piece reminded me of all the questions still left unanswered.   I wanted to create a place that would give me hope, a symbol that would be positive and make me smile, just as my son does.  Just as the metamorphosis of a caterpillar turning into a butterfly is a beautiful representation of the miracles that nature is capable of, so too is the metamorphosis of our children once they are provided with all of the tools and resources available to them.  A butterfly is a symbol of hope, change, and positivity - all the things we want and need for our children.