When my son was first diagnosed with autism, I was sure the diagnosis alone would give us options and resources.
Prior to diagnosis, he was often dismissed and so was I.
For years I heard: He needs more discipline. Just make him wear shoes. He'll get over it. He needs to work harder, do better, stop acting out. He has behavioral issues. He has a demon.
And so many other accusations.
For years I was told: You need to discipline him more. You are too soft on him. You shouldn't let him do that. You can't give in to him. And so many other admonishments.
So when he was diagnosed, I thought help was on the way. I thought it would give us referrals to experts that would help ease the most intense aspects of his life. The daily meltdowns and the pain he experienced from sensory input were so intense. He was miserable all the time. And so was I.
The truth is, we got the diagnosis, and then we went home.
Everything was exactly the same.
Moreover, although we would eventually find wonderful resources and options that would ease my son's pain, it became clear that if my son was going to have any shot at relief, it was on me to find it.
I started writing a year later.
It was a decision I did not take lightly. My husband and I prayed about it. We talked about how to best protect my son's privacy, and if that was even really possible. We worried about what he would think in the future, as an adult reading my words.
And in the end, we decided to do it.
We decided to do it because that first year post diagnosis was a very lonely time. I honestly believed my son was the only one experiencing the extremes of sensory overload and meltdowns. I believed it, and I parented him from that belief.
I could not find a resource that spoke to what to do, and how to do it, when it came to the day-to-day care that my son desperately needed.
I write as a way to encourage other moms (and dads), who are trying to figure this thing out. I do share parts of my son's life, including autism, but not exclusively autism. I share parts of his brother's life. I share parts of my marriage. I share the most honest things that I can -- because that is what I needed to read post-diagnosis. I needed reality. I needed day in and day out. I needed help.
I have had to repeatedly protect my son's privacy. Several times, I have turned down opportunities that would've brought national attention, but also would have required me to share more than I thought wise in protecting my son.
I am not sure that I am doing this well, but I am trying.
Lately, there has been a growing controversy around whether or not a parent should be blogging at all about their child's autism (or any other diagnosis). This controversy has harsh undertones, and there is a ton of passion on both sides of the debate.
I have felt the sting of it.
"You are using him for your own gain."
"It is horrible to see the way you are exploiting your child."
"You are not a hero. You make me sick."
... and so many more comments from genuinely concerned people, angry that I am making this choice to publicly share something that ultimately is not my own.
Autism is not mine. It is 100% my son's.
Parenting and loving a child with autism however, is 100% mine.
Ultimately, I write about my son's autism because it matters. I am not ashamed of him in any way. I am not trying to co-opt his experience and make it my own.
I write because when I do, I find more and more people who help, who say, "Me too," who pray for him, and encourage me to be a better mom. I write because every day, I get an email or a message from a mom on the edge, who doesn't know how to take the next step and the next.
I write because through writing, I meet adults with autism, willing to share their perspective and experience. Through them and their gracious hearts, I am learning more about my son - what to look for, how to help him, what he might be experiencing. They caution me about using language that might someday offend him. They encourage me when they see me doing something helpful. They calm me down and say, "It's totally a part of this. It's OK to just let him do it. Don't worry. He will be fine."
At the end of the day, writing about my son's autism helps me be a better mom to him.
And that is reason enough.