What do we do now? I felt like this was the next question I was asking myself after the we got the diagnosis. After spending hours upon hours scouring the internet looking for answers to the ‘where’, I was onto the ‘what’. As a parent to a special needs child, what did I need to do? What should I not do? After being in this for more than 3 years now, I feel like I can say for certain, I still have no idea – at least when it comes to the right therapies, right medications and right diets. Everyone believes what they believe is best, and everything else is a waste of time. I feel like the road we have gone down has helped our son and I’m glad we tried. I would rather know we tried and failed, then didn’t try at all. I think all the time, am I doing enough? Am I doing the right things? What else could I be doing?
We went to our first autism conference in November of 2014 and there was a speaker who was the parent to an adult child with autism as well as many other medical conditions. She talked about the grief and broken heart she felt learning and then dealing with her son’s conditions. Her story was touching, but one thing she said really stood out to me and continues to be something I live by today. She said she was having a particularly tough week and in desperation, asked her husband a probably rhetorical question, “What are we supposed to do now?”. And he simply said, “Love him.” I don’t think there is a truer statement for any parent. We are here to love our children – no matter what the circumstances, no matter how hard it gets, no matter what – we are supposed to love our children. It is really that simple.
The first book I ever read about autism came in the year following Carter’s diagnosis. I would highly recommend it, because it’s written by parents of children with special needs. And who knows better and can say it more honestly than other parents, exactly how you are feeling and exactly what you are thinking. The book is called, “A Different Kind of Perfect.” One of the parents spoke in their story about their child and their saying has stuck with me ever since. Their child had sensory integration dysfunction or DSI, but I just subbed out “autism” since that’s what I was dealing with and it still rings true. “I wouldn’t love my son more if he didn’t have autism and I don’t love him less because he does.” – Doreen Bonnett.
I feel like having a child has shown me the closest thing to God’s unconditional love. I love Carter, not because of anything he does or doesn’t do, but simply because he’s my son. There is no other prerequisite to my love. He can’t earn more of my love and he can’t do anything to take that love away. When things get hard, I remember that and thank God for his love – for me and for Carter. I am not deserving and yet God gives anyway. How amazing is that? That’s what makes this an easy question to answer. Yeah, maybe I don’t have answers to all the day to day what’s, but I have the answer to the really hard one.
There is a quote I found soon after Carter was born and subsequently write it in every book or card I give to new parents at their baby shower. This quote helps me put things into perspective when I get overwhelmed with the day-to-day. Carter is my gift and responsibility – not to fix or to change – but to teach and love. My job is to take time with Carter and just be his mom. To teach him to trust God by being someone he can trust.