Monday, January 23, 2012

The hardest words to hear...

All too often we use facebook and blogs to keep up with long lost friends, we share cute things our kids do, or what we eat for lunch.  We open up on the surface, but we don't talk about what is really going on in our lives.  Although I don't think that sharing my most intimate thoughts and feelings with hundreds of friends is appropriate, I am opening up about a struggle in my life.  Not because I want sympathy, or because I want everyone to know my business.  It is because my family is beginning a journey that will be lifelong, with an incredible amount of dedication and hard work ahead of us.  I need the insight of others to take this on.  I have some incredible friends who may have advice and knowledge that I do not.  I feel vulnerable, I am fearful.  I am a mother that would do anything for my child.

Every parent can empathize with the feelings and worries that you go through when expecting a child.  You want your baby to be perfect in every way.  As a mom you try to eat all the right things, you follow every doctors order.  You can't wait for your bundle of joy to arrive, but the anticipation and anxiety for a healthy child doesn't go away until you have that sweet baby in your arms.  You count ten fingers and ten toes, they are good and pink, all is well.  You breathe a sigh of relief, you got them here healthy.  Everyone in the family tells you how beautiful the baby is, they look like daddy, grandpa, great uncle Bob...and on and on.  You go home all clad in blue, happy to begin this wonderful life with a new member in the family.  Everything is perfect, or so you think...

When Frankie was almost four weeks old, he gave us quite a scare.  He was hospitalized for pertussis (whooping cough).  Pertussis is a very dangerous childhood disease, and in a newborn can be fatal.  After almost a week, we were in the clear though, and Frankie got to come home on a breathing monitor, but was doing fine.  Again, we breathed another sigh of relief.
Life went on and Frankie seemed to grow and develop like any other baby boy.  It wasn't until almost a year later that I began to notice that something wasn't quite right.

When you have the second baby, automatically you compare their growth and development to the first child.  Livi didn't walk until the week of her first birthday, but Frankie was walking at 10 months old.  We thought that we were ahead of the curve.  I then started to notice some differences though.  His inability to pay attention to toys, his dislike of loud noises, he didn't follow simple commands like "get your cup" or "bring me that toy".  He wasn't speaking, but that didn't concern me as much because Livi didn't talk until later.  We live in a bi lingual home, so that is typical for children to speak later.  Then we got to 18 months old, and I started to notice that he can count to 10, but he doesn't wave Bye Bye...he doesn't look at me and call me "mommy".  I knew in my heart then that something was wrong.  I expressed my concerns to others but I got the typical answers, "He's just a rambunctious boy", "boys talk later than girls".  Then I questioned myself, "Am I overreacting"? I'm a nurse, my husband is a doctor, we should know what to do...That all goes out the window when it is your child.  The child you carried for nine months, the child that you love so much you would do anything for.  Then we did the right thing, we acted like parents, and we went with our gut feeling.  He was our baby, and we knew him better than anyone. 

We entered the First Steps program when Frankie was 20 months old.  He went through a series of evaluations and qualified for speech and occupational therapy.  We still didn't have any solid answers, but we had a plan in place to help our boy.  Over the next few months we began intensive therapies, at first, the progress was slow.  It became more evident though to others that in fact we were doing the right thing and that there were in fact delays.  
We are now almost a year into therapies, and we are starting to see some great progress.  Although his speech is still very delayed, he is starting to begin to use a few more words.  His social interaction has drastically improved, but there is still so much more work to be done. 

Over the past two months Frankie has went through some very intensive evaluations with the best professionals in the area.  On Friday we finally got a diagnosis.  Frankie has Autism. 

There are no words to describe the feelings that you have when you hear those words.  In our minds we both knew that it was likely, but in our hearts we were holding onto the hope that it wasn't so.  Later that afternoon I was laying in the bed with him watching him nap and I realized that this was the beginning of an incredibly hard task, that would last a lifetime.  A task that I never expected, but at the same time realized that I had to step up to the plate.  My child will have to try 10 times harder than other kids just to master simple tasks such as saying "mommy".  We will have to be dedicated as parents like never before to do everything that we can in order to help our child. 

I look at this beautiful, sweet, loving baby boy and he absolutely melts my heart.  His smile can light up a room, and his energy is felt by everyone around him.  His eyes are bright with a sparkle that immediately gets your attention.  He is a gift, he is wonderful, and he is mine.  He is LOVED. 

I am asking that you will help us in this journey, with prayer, advice, and encouragement.  I am typically a private person, but I will do all that I can to help my child.  We are blessed to have the best therapists and schools.  Our family is incredible.  The next step is to continue to bombard him with therapies, and be educated on the path that we need to take, as well as more testing.   Again, please keep us in your thoughts, this is the beginning of a journey that is going to be incredibly hard, especially for my perfect boy.