It’s The Little Things

I remember the day I found out I was pregnant with my first child, I was so excited.  I loved every moment of being pregnant, the astounding process of another person growing and developing inside of me felt like such a privilege.  

My son’s entrance into the world was drama-filled; full of tears, fear, excitement and thanksgiving.  

My husband is in the military and at the time was due to be deployed to Iraq for 6 months.  He was set to leave on the 26th of January and my due date was January 20.   

Guess when I ended  up having my baby?   

January 26 at 11:45pm. And to add insult to injury, I had an emergency c-section due to fetal distress.  Talk about an eventful day.  My husband missed the birth of his first son and the military would not allow him to come home.  When I was finally released from the hospital, baby and Dad got to meet for the first time over skype.  His dad couldn’t stop smiling.  He wanted to stay on that computer all night just looking at his baby.  

He was such a good baby, so sweet and didn’t make a fuss, only when he was hungry.  He loved being read to.  He was reaching all of his milestones early, holding his head up, rolling over, crawling, he was even walking at 8 months.  

But there was one area he seemed to be lagging behind in, and that was speech.  His speech began to pick up around 18 months and by 2 he was starting to string words together. His Dad deployed again, this time to Afghanistan.  A few months after Dad’s departure, my son began to lose language.  It was gradual and very concerning. By the time Dad returned, my son had stopped talking, and he lost interest in other children.  We had him evaluated and he was diagnosed with autism.  

I remember driving home from the appointment, the clinician’s words ringing in my head.  “You are taking home the same kid that you brought here.  That has not changed.”  Boy, it sure didn’t feel like it.  In a matter of hours, our whole world had changed.  

That’s the thing with Autism; the prognosis is foggy at best.  Some children respond well to treatment, some even lose their diagnosis, while some never speak.  What would my child’s fate be?  I cried the whole way home.  I remember calling my husband, my mother, my sister and his godmother.  And after telling all of them, I did not mouth the words “he has autism” for over a year.  I couldn’t do it.  

People say when your child is diagnosed you experience the stages of grief because you grieve the child you thought you were going to have.  I certainly did that.  I stayed in denial for a very long time, I was sad, angry, and decided that life was unfair.  

Would I ever get to have sleepovers at my house?  

Would I ever get to cheer him on at a basketball or football game?  

As devastated as I was about the diagnosis, one of the positives was he now had access to all of these great therapies.  He was in the hands of professionals and he was going to get better.  And literally for the first year we saw nothing.  No significant changes, strides or progress.  I wanted some of the simple things in life.  I wanted to be able to ask my son how his day was at school and he be able to tell me.  I would ask him every single day “how was your day?” and there was no reply as we walked together in silence.  I would sometimes wipe a tear away as we would be walking down the hallway of his daycare and I would hear another child, sometimes younger than mine, telling their parent all about their day.  

But with all things, you settle in and you begin to make a new normal.  Our son got an opportunity to attend a summer day program for children with autism and other developmental delays and they had an informational night for the parents.  So after the presentation, they gave us our room assignments and we were able to meet our child’s teacher and classmates. I remember walking in the classroom and there were 2 or 3 other parents in there and we were all standing around quiet.  

Then this mother walked in and boisterously greeted the group.  She had her daughter with her who was in a wheelchair.  The mother immediately started up conversation with everyone.  She was such a light.  She began telling us about her daughter.  She explained that her daughter was just coming off of a 9 month stay in the hospital.  She shared that her daughter had a cancerous brain tumor that they had been fighting for years.   She said every time the tumor came back, her daughter would lose skills like language, the ability to walk and hold things, so she would have to get back into therapy to learn them all again.   

Her daughter was going to be attending the same special needs preschool program as my son in the fall and said that at her IEP meeting at the school, they asked her what were her goals for her daughter.  I will never forget what she said, because it changed my whole perspective on my son and his autism.  She said “I told them, I just want my daughter to have friends.  When you don’t know whether your child is going to live or die, you learn to glory in the little things.”  

It was like a light bulb in my head had just come on.  I had been so frustrated, discouraged and depressed regarding my son’s progress because I was solely focused on the end goal; when he would be better, when he would have friends, when he would be talking and could tell me about his day.  

After that day, my mentality and focus changed.  

And because my eyes had some help from my newly fitted “gratefulness glasses” I was able to see my son and his progress in a whole new light.  From that day forward, literally daily, God would show me something my son was doing that he had not been able to do the day before.  Whether it was a new word, singing along with me to a song, hugging his brother, engaging in pretend play, noticing an airplane outside the window and labeling it correctly.  I will forever be grateful for that lesson, a gift really, that the unnamed beautifully spirited lady gave me that day. 

 Although there are many losses we have experienced along the way from autism, there are gifts as well and everyday I still find something to be grateful for. 

3 thoughts on “It’s The Little Things”

  1. Oh my goodness! My son does not have autism, but we had our own traumatic event in his life. The people that we meet along the way certainly can be blessings in disguise. I think you’re doing great momma! Keep sharing – You’re going to find lots of other moms that connect with you on the same level <3

  2. I teared up reading this. We are in the middle of our own journey to diagnose my youngest as being on the spectrum, and it’s felt really discouraging at times. But the few wins that we have are made that much more special now!

    Hugs and solidarity to you – thank you for showing up for you sweet son and having courage to share your journey here with us.

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