January 20, 2010

The First 6 Months After the Diagnosis

I remember the day well. It was October 17, 2006 when I received a phone call from a school psychologist telling me that my son has autism. I don't remember anything that she said after she said "autism". I ended the conversation as quickly as possible and just numbly stared at the wall before finally picking up the phone to tell my husband.

In some ways, I felt relieved. Don't misunderstand...I did not want this for my child or my family. But after over a year of struggles, concerns, tests, and doctor visits, I was glad to finally have an answer. Some people don't like labels for their child, but I saw the label as a resolution, not to mention an open door for services and resources.

Over the next 6 months (and probably more), this is what I experienced as I moved toward accepting this unwanted diagnosis:

  • Grief and General Sadness: As I mentioned in my previous post, a diagnosis like autism (or any other disability for that matter) for your child is a very difficult thing to walk through. During those first few months, my thoughts and days always started and ended with autism. It was difficult to focus on much else. 
  • Questions: In my sadness, I wrestled with alot of questions, most directed at God, but some at myself. Was it something I did to cause this for my son? Why would God allow this to happen? Would my other kids have it? What kind of future would my son have? The questions were endless, but I had no answers.
  • Anxiety: Because of so many unanswered questions, I spent alot of time worrying about what we should do for Will, if what we were doing was enough, and worrying over his future. I felt that if I worked hard enough with him, I could make everything better, but my striving sometimes fueled my anxiety. I had to actively work to trust that God was going to provide for Will by leading us to the right treatments and right people instead of feeding my anxiety.
  • Feelings of Isolation: Everywhere I went, I watched other moms and kids together, often wondering to myself what it was like to have a typical child. I couldn't relate to their stories or the things they were concerned about. Sometimes moms of special needs kids feel singled out or isolated because of the disability, but I experienced a self-imposed isolation. What I mean by that is that because I felt few could understand my situation, I closed myself off. I didn't want to be the "downer" and always talk about how I was struggling, but even if I did, it was isolating to know that others still didn't fully understand.
  • Back to the basics of my faith: I have been a Christian since I was 8, but the circumstances surrounding my son's diagnosis took me back to the very basics. What is God's character that He would allow this? Does He always have my best in mind? How is suffering His best for me? What is He doing in my son's life? (I will talk about the answers to these questions in a later post)
If you are living in a fresh diagnosis, here are some suggestions I would offer you:
  • Give yourself time to grieve: I tried to tell myself that I should be stronger than this, it shouldn't affect me so much...I mean there are people suffering far worse in the world. But it's hard. It really is. And that's OK. Do what you need to do to grieve and give yourself as much time as you need. Cut yourself some slack and know that you will be yourself again. 
  • Talk to someone: Talk out what you're feeling and experiencing with someone you love and trust. For me, it was my husband. We talked and cried together so much in those first few months. Another thing that helped was talking to someone who was a little further down the road. A couple in our church with a teenage son with autism spoke some incredible words of hope and encouragement to us.
  • Read the Word: God's Word will refresh you and remind you of truth at a time when you need it most. As I questioned Him, His Word answered. If I was not consistently in Scripture, the anxiety over an uncertain future would eat me alive. Thankfully, God gives us a peace that passes all understanding when we bring all of our concerns to Him.
  • Remember your child is the same child you have always loved: This may seem like a no-brainer, but I remember looking at him differently after the diagnosis, almost like he had a Scarlet Letter "A" on him. I realized that at times I wanted to change him and wasn't accepting him for who he was, autism and all. Coming to terms with the fact that he was the same child I longed for, carried, gave birth to, and lovingly cared for helped me accept him rather than always pushing him to grow.
The best words spoken to me in those first few months were simple: There is hope for your child. I repeat those to every mom I talk to facing a similar path: Even though you may not see it yet, there is hope for your child!