Down The Road

When we first began our journey with autism we just wanted to get by, day by day and sometimes hour by hour. What began as a speech and language evaluation soon became a series of evaluations and questionnaires that were so detailed that I was overwhelmed by both their number and complexity. Then Nolan started school and I felt like I could finally exhale because we were on the right track to helping our son. I was able to let some of the tension fade away now that we were being proactive. We were doing what good parents do! We were doing right by our son! Exhale. Inhale. Repeat.

We have seen wonderful progress with Nolan in the almost four months that he's been in school. His vocabulary and overall communication have improved, he's not as fixated on certain objects, he's socializing more with other children, he sings, and he plays with more purpose. We are grateful for the help he is receiving and for the love that his teachers have for him.

When we met with the Evaluation Team to go over the specifics of Nolan's IEP, Todd and I came away from the meeting with great hope that early intervention would "cure" Nolan. In speaking with the Evaluation Team we agreed that our common goal is to have Nolan mainstreamed when he enters Kindergarten in the fall of 2012. Maybe I was naive, or in denial, or both, but until just recently I had this crazy notion that the autism chapter of our life would simply close at that point. I had not dared to look farther down the road than Kindergarten. Mainstreaming in 2012 was the goal, I didn't question the fact that we would meet it, and then everything would miraculously be OK and we could all go on our merry way, no worse for the wear.

Grappling with the reality that Nolan will most likely always be "different" has become so much more difficult for me than I ever imagined. As a teacher, I was ever the cheerleader for the kids who were just a tad bit different from the rest. I celebrated their uniqueness and encouraged them in it. But now that it's my little boy who stays to himself at birthday parties, and my little boy who doesn't know how to play pirates or cowboys with his peers, and my little boy who hides in the corner in a loud room my heart has shattered into a million little pieces. I want to scoop up those little pieces and meticulously put them back together so my heart can be whole again. But just like a shattered and mended glass can never be perfectly water-tight, I question whether or not my heart can ever been whole again. Repaired rarely equals good as new.

Talking with other parents of autistic kids can be both comforting and disheartening. Only another parent of a child with a disabilty can truly understand the elation you feel when your child reaches a goal. It's a blessing to celebrate together and to encourage our kids and each other along this journey. And then we grieve together over "what might have been" and what our children will very likely miss in life because of their difference. Will our children be accepted and befriended by neurotypical kids or will they always be the odd one out? What does the future hold? What will we encounter down the road?

Despite my fear and sense of loss I know the future is not bleak. I know that Nolan will continue to progress and to heal. I know that God has a wonderful plan for his life. I know that my heart will bear scars but that it will be full of gratitude for what God will do. I just wonder what we will encounter down the road and how rough the journey will be.