A.D. as in “After Diagnosis.”
Luke’s diagnosis was a paradigm shift for our family. It changed the lens through which everything else was seen. Even now, there is nothing we do or think that is not somehow touched by autism, but since this post is sort of a “relaunch” for Spectrum of Blessings, I wanted to start by telling you where I am today. How I’ve changed. What I’ve learned.
1) Nick doesn’t love me for who I am.
I know it’s a very popular thing to tell singles – “find someone who loves you for exactly who you are” – but if there is one thing that I’ve learned, it’s that our experiences change us – drastically so – and if Nick loved me for who I was when he married me he would be sorely disappointed now.
I wasn’t the woman he married when I left Luke’s neurologist’s office and collapsed into my steering wheel in a puddle of tears. One of the things that autism parents like to remind each other is that, when you leave the doctor’s office after receiving a diagnosis, you leave with the exact same child you walked in with. This much is true, and it’s very comforting to think that your A.D. child is no different than the child you have nurtured and loved until that moment. What they don’t say, is that you will leave that office an entirely different person.
I definitely wasn’t the woman Nick married when I subsequently became a Google maniac, and stayed up all hours of the night researching every possible treatment and cause for Luke’s autism, only to curl up in the fetal position and cry when it finally overwhelmed me. I can only imagine that it must have seemed like an alien was inhabiting my body in those days, and I would venture to guess that he wondered if I would ever snap out of it, but I don’t remember him ever becoming cross with me. He just let me grieve and heal as I needed to.
And I wasn’t the woman he married when I started to get it together and move forward, either. Even when I started to see humor, and value and joy in our circumstances. Even when Rain Man was a funny movie again (though in a totally different way). I was still not the woman he married. In fact, I’m quite convinced that I will never be her again.
But thankfully, my husband doesn’t love me for who I am. He loves me because of who Jesus is – and Jesus doesn’t change. He loves me because he promised to love me. We rest in knowing that the God we both serve is at work in our family, and will ultimately bring about our good.
2) I like the new Joyce.
I look back on photographs of myself before Luke’s diagnosis and there are many things that I envy about that girl. She looks so carefree and innocent. Unacquainted with difficult circumstances, she is fearless. Yes, there is a part of me that would love to be her again. But to be her again, I would have to sacrifice something very valuable – a peace that was hard-fought and hard-won, a compassion that comes from a place of true empathy, a deeper walk with God.
I do wish that my voyage of self-discovery did not come at such a high price to my precious son, but that was never my call to make. God ordained him to have autism before the foundations of the world were laid. I have to believe that if I knew everything God knew, I would see Luke’s disability as a good thing not only for me, but for him, too.
3) Luke is exactly who he was always meant to be.
This was a hard pill to swallow, but once I did, it was liberating and peace-giving. You see, the guilt associated with an autism diagnosis is suffocating. It’s your fault that your child has a disability in the first place, isn’t it? You exposed him to too many chemicals during your pregnancy. You let him watch too much TV. You had him vaccinated. Maybe you are just a bad parent.
It seems as though everyone has advice regarding what you should be doing for your child. Your child needs to be on a special diet, and be getting a ton of therapy, and then of course there are all the biomedical treatments. Oh, you aren’t doing all of that? Well then, your kid is never going to make progress and it’s all your fault. I mean, what kind of parent are you? Don’t you want your kid to get better? Is there a price too high to put on your child’s future?
No autism parent can escape it. If your kid doesn’t get much therapy, you feel guilty that you can’t provide more. If your kid gets a lot, then you feel as though you are robbing them of their childhood by keeping them in therapy all day long. If you are spending time with your special child you feel guilty for not spending more time with your typical children. If you are with your typical children you feel guilty for not tending to your special child, and so it goes.
Eventually, I had to put an end to this rat race.
I am being honest when I say that over the course of this journey I have probably blamed Luke’s disability on at least a hundred different things I did – everything from living too close to a highway to using dandruff shampoo during my pregnancy. I have watched children who received far less therapy than Luke make far more progress, and in a much shorter time frame.
I could spend my life wondering what I could have done differently, and never know for sure if any of it would have changed a thing, or I could accept that the God who is sovereign over all things chose to give Luke this disability.
“Who made man’s mouth? Who made him mute or deaf or seeing or blind? Is it not I, The Lord?” Exodus 4:11
It can be offensive to one’s sensibilities to think that God would make someone disabled on purpose, but there it is in Scripture, and while it may sound hard on the surface, this verse has brought me more comfort than any other. Why Luke has autism, or what I could have done better, doesn’t matter. Those alternate realities don’t exist and they never did. Luke is exactly the person that God always intended him to be, and he is completely equipped to fulfill God’s purpose in his life.
4) Healing doesn’t always look how you thought it would.
To say that Luke’s diagnosis upended our lives is an understatement. We went from living in our own apartment to having a four-year long campout on my parents’ living room floor just to afford Luke’s therapies, but a little over a year ago, we moved into a house and got back out on our own, and that felt like healing.
Birthdays used to make my heart hurt. I had long believed that Luke’s seventh birthday would be particularly difficult for me. Most kids who are going to make significant improvement do so by the age of seven. So in a way, that felt like the “times up” birthday. But instead of being a hard birthday, it was actually the first one that I didn’t feel that all-too-familiar ache in my gut. He still had a severe disability, but I was free from the ticking clock. Luke was happy and that was enough, and that felt like healing.
Five years ago I never would have dreamed of having another baby, but Grace has brought so much joy and laughter into our home. She feels like healing.
And this past year we did something that not long ago I would have considered unthinkable. We walked away from private therapy. It’s a long story that I will go into detail on in another post, but the bottom line is that we felt God was leading us away from devoting our family life to endless appointments that enveloped our entire calendar. Don’t get me wrong. I loved the young women who worked with Luke. In fact, that was part of what made this such a hard decision, but I haven’t regretted it.
We suddenly had time for park visits and swimming lessons. Luke had more time to interact with his sisters, his father and I. And there was another side effect that I wasn’t anticipating. Removed from the constant therapy appointments, I stopped being so focused on Luke’s disability, and while I still think about autism a lot, it is not as all-consuming as it once was – and that felt like healing, too.
So going forward, this blog is going to reflect all the ways we’ve grown as a family. I’m still going to write about Luke and all my adventures as a special needs mom, but life isn’t all about autism anymore.
I’m going to talk about my mothering experience as a whole. You are going to hear more about my very funny and precocious middle child, Faith, and my adorably sweet baby, Grace. You are going to hear more about my husband, Nick, and how he and I navigate marriage and parenthood. I’m excited. I hope you are, too.