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.