Autism, the deafening sound that came out of the doctor’s mouth when she spoke it to me. I had been begging for a diagnosis for almost 2 years, but when I finally heard the word; everything went silent. You know what it looks like, we’ve all seen it in serious movie moments. The person hears bad news or is in shock from someone’s statement to them. The volume of the doctor’s voice went from 100 down to 10 if there were a remote control. My thoughts escaped me, and I felt as if I were drowning in all the answers I finally had. I wanted answers; I had been fighting for them for so long. But nothing could prepare me for this moment.
I remember the Doctor saying “Sarah, is there any questions you have for me, I’m sure you have so many so take your time”. I couldn’t think of one. Not a single question. There I was sitting in this large room with my 3 beautiful boys wishing my husband could be there with me to hold my hand and to maybe even speak for me. But I was facing this moment alone. My husband travels for a living, so trying to make all these appointments with numerous Specialists after Specialist to fit in his schedule just wasn’t in the cards for us. I sat there for what seemed like hours trying to remember that I had written down a few questions on my over filled notebook that was in the diaper bag. Once I finally came out of the silence
I reached for the notebook and was trying to remember what page it was written down on. Was it on the page where I kept a log of the boys sleeping habits, or the page of what they ate that day, or maybe it was on the page where I wrote down all the symptoms I saw in our youngest? I finally found it on the back of the page I had written down the appointment information on. I sat up straight and tried to not look overwhelmed. With tear filled eyes I looked up and asked my questions.
Why didn’t the doctors catch it sooner in my older two? Stevie (7 at the time of diagnosis) and Maycen (4 at the time of diagnosis) were not even on my radar to consider them as autistic. Our youngest Sawyer (20 months at the time of diagnosis) was the one I noticed having severe problems. Our older two were diagnosed with ADHD prior to the Autism Diagnosis. So, you can probably guess that I put any issue I did see on that diagnosis. How did we miss it? How did the doctors miss it? Did I do something wrong? Should I have noticed something sooner? Those were the questions bumping around in my head for the rest of the day.
But I had to remember that this all started with my overwhelming concern for Sawyer. My sweet little golden curled hair baby. I had to remember how hard we had to fight for this moment. Every doctor appointment, every referral, every “We don’t have any appointments available for 6 months” phone calls, all the crying in the car moments because another doctor wanted to send us to, yet another doctor and we still had no answers. This difficult appointment was for all of that.
How can a diagnosis we had been fighting for be so heartbreaking? I kept hearing from other parents with children on the Spectrum that it’s not the end of the world. No. It’s not the end of the world. But it was the end of the life I saw in my mind for each of my boys. The lives they will now lead are full of holes and questions. My life along with my husbands, was and will forever be changed. We now must find a new vision for our family. A new dream.
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