Living on the Spectrum

Sitting in the pediatrician's office that evening I felt sick. My stomach was in knots, my throat dry. I knew that tears were not far away, but I did my best to appear strong and composed, as though I had it together. I wanted to make sure I asked questions, and listened - really listened - to the doctor's answers. 

I couldn't stop staring at the piece of paper he held in front of us as he explained the situation we were facing. He said there were several red flags, based on the questionnaire I had filled out about our eldest son.

Loss of speech.

Poor eye contact.

Toe walking.

Jumping. Hand flapping.

No imaginary play. Solitary play.

The doctor refused to make a diagnosis then and there, but in his opinion, Jacob appeared to be exhibiting signs of autism.

Autism.

It was like the world came out from under me. Driving home that night, Husband and I didn't say much. We had so many thoughts and emotions we were trying to process. This had all happened so suddenly. Only a month before, we thought we had a typically-developing two year old, who was picking up new words every day. Then in mid-January we noticed he wasn't talking anymore. At all. In fact, our middle son, 10 months younger than Jacob, was talking more than he was. We knew something wasn't right.

It's been a busy and involved road since that night in the pediatrician's office almost a year ago: Speech therapy, occupational therapy, restrictive diet, dietary supplements, special ed preschool that focuses on speech delays. Lots of prayer.

It's taken me this long to feel ready to talk about it. Until now, I've only shared this part of our lives with a select few. My biggest concern has been that people will treat Jacob differently, or label him. I have said from the beginning, no matter what, autism may be something he has, but it will not be who he is. 

Now though, now that I have some perspective, I am excited to write about our journey. I won't lie. In the beginning, before the therapies started, before I really educated myself about the autism spectrum, I had a lot of fears. There were many days when I literally collapsed onto the floor crying, completely unsure of what my son's future looked like, now that autism was most likely a part of it.

We believe Jacob has what is known as regressive autism, meaning that for approximately the first 2 years, 8 months of his life, he was developing typically, there was no reason for us to be concerned. And then, without warning, he began regressing: losing language, not making eye contact with us, or responding to us; disappearing into his own "world". He began jumping a lot and flapping his hands, also known as "stimming". He would carry out repetitive actions.

This past year though, Jacob has made amazing progress. He went from not using any words, to regularly speaking in four-word sentences. He is beginning to ask "W" questions. He uses imaginary play on a daily basis. He can make choices when given options. His eye contact is stellar, and he often engages with other people. He is awesome at following directions. He knows the entire alphabet - recognizes each letter, knows the sound each letter makes, and can tell you a word that starts with each letter. He can count to 30, and I have lost track of the number of songs he knows by heart.

To someone else, these may all seem very simple, but watching my son learn and master these skills has been amazing for our family. I have watched him struggle so many times; frustrated when he doesn't have the words to express what he is feeling or thinking. So with each new step and task learned, I consider it one more crack in the process of breaking into his world. 

Our focus will remain what it has been this year. Keep pushing Jacob, keep supporting him, keep getting him the services and assistance he needs to continue building on the skills he has learned, and continue expanding his speech. Our ultimate goal at this time, is to have him in a regular classroom by the time he starts kindergarten. I believe he can do it, and we are committed to making it happen.

From now on, I will occasionally be sharing parts of our journey and experiences we have while going through this. I can't wait to see where Jacob will be 6-, 12-, 18-months down the line. I know he will only get better and better.

That January night, sitting across from the pediatrician, the last word that would have come to my mind was Joy. And even though we definitely have struggles and hard days, I have to say that seeing my son learn so much has brought me immense joy. Every little accomplishment is a reason to celebrate. I have also learned that some of my favorite parts of Jacob's personality are probably related to his autism; he wouldn't be the same boy he is without. And I wouldn't change him for anything.