Jamie Pacton lives in Milwaukee with her husband Adam and her sons Liam (almost 3) and Eliot (9 months). She is a work-from-home mom who teaches composition and technical writing for several online universities. She has published creative non-fiction in Now and Then: The Appalachian Magazine and The Mockingbird. When she’s not playing with her children, trying to grade essays at night, or wading through materials related to Liam’s new diagnosis, she likes to read, write fiction, go the Milwaukee Art Museum alone, and take walks by Lake Michigan.
Postcard from Holland: Autism Day 1
Dear Friends and Family,
Today is my 32nd birthday. It is also the day that we received the official, clinical diagnosis for Liam. Severe Autism. Meets all the criteria. Very much on the spectrum.
I really didn’t mean for these events (birthday-diagnosis) to coincide. (I don’t have the energy to orchestrate that sort of melodrama right now.) I tell you this so that you know, so that I can catch you up a bit on what’s happening here, and so I can explain this in some way.
This year has been hard. Many of you may remember that after Liam’s 2nd birthday last April, my sister Kim bravely approached me and shared some of her concerns about his development. She had spent a sleepless night researching autism and trying to figure out why her beloved nephew was so withdrawn at his own party. Why didn’t he play in the pool with Loki and Emma? Why couldn’t he blow out his own candles? Why had he never slept through the night? Why couldn’t we leave him with anyone without serious screaming? Why did he walk on his toes and flap his arms? Why did he want to watch the same Elmo videos over and over and over again? Kim found answers in lists of common symptoms of autism, and she told me about them.
Adam and I were furious. How dare she—not a clinical professional—presume to tell us about our child? Couldn’t she see that our sweet, odd son was always either too tired or too distracted or too overwhelmed to interact with other people? Sure he wasn’t talking, but lots of kids did that. Things were said, tears were shed, we moved on; but the seed of doubt had been planted.
What if something was wrong?
We stewed, we denied, we made excuses for Liam. We had another baby, we moved to Milwaukee. Then, one day last September, after a frustrating afternoon spent trying to engage Liam, I noticed something. I brought out a toy—a simple push-the-button-and-something-pops-up sort of toy. As I showed it to Liam, I noticed that he physically could not complete the simple tasks it required. He was interested but not able to play with this toy that I knew an 8-month old could figure out. The next day, I called Wisconsin’s Birth-to-Three Early Intervention program, and we started on the road we’re now walking.
What I have learned over the last five months of intense therapy is almost impossible to catalog.
I know that Liam has many more developmental issues than he first appeared to have. I know that he might never talk or sleep through the night or be able to integrate into a “normal” life. I know what it is to hope and have those hopes crushed. I know what it is to grieve through the seven stages—shock and denial, pain and guilt, anger and bargaining, depression and loneliness, upward turns, working through, and then back to acceptance and hope. I know what this process can do to a marriage and how much work it takes to come out stronger. I know that the reserves of my patience, creativity, strength, and hope are so much deeper than I once imagined. I know that I know nothing in the face of all this. I know the future may hold a lot more than we expect.
I have spent the last week really grieving as I anticipated the diagnosis today. As I washed dishes last night, I told Adam, “I feel like I’m going to a funeral.” He nodded in silent agreement and we left it at that.
Then, at about three this morning, as I was up and waiting for a dancing, biting, climbing Liam to fall asleep, I realized this: the diagnosis was not a death-sentence, but a new beginning. Because of it, we can go forward with new information and new hope, and now we have clear parameters to make a plan. I snuggled sweet Liam and really embraced the idea of a new journey that will bring positive results.
After the meeting this morning, Adam and I went to breakfast. We were both a little shaken; we were both on the edge of tears. We ordered the most fatty omelet in the place (ham + bacon + cheese + pineapple), and we talked about it. Over coffee and toast we shifted our expectations, affirmed our dreams together, and discussed the strength, patience, and hope we have discovered this year. We weren’t great, but we were a little better.
We have also found other ways to help us understand this turn in our lives. There’s a well-known piece by Emily Perl Kingsley that has really resonated with us. It’s called “Welcome to Holland,” and it’s about how raising a child with special needs is like taking a trip to an unexpected place. To paraphrase the piece: we thought we were going where everyone else was going. We thought it would be easy and glitzy and fun all the time. But, we didn’t get there. We didn’t go to Italy (like everyone else did). We landed in Holland. As Kingsley writes, “It’s slower paced than Italy, less flashy than Italy. But after you’ve been there awhile you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.”
So, that’s where we’re at right now. Holland. Where we went in 2002 and loved it. Where we stayed on a houseboat, walked through tulip fields, and saw charming medieval villages. It’s not where we planned to go with Liam, but we can be happy here.
Take a look at Kingsley’s piece. It will help you understand our lives right now. It will explain why Adam brought me a bunch of tulips yesterday. It might help some of you work though this news in your own way.
That’s all for today. The weather is lovely in metaphorical Holland and it’s naptime in Milwaukee.
I love you all and I’ll talk to you soon,
Editor’s note: “Welcome to Holland” by Emily Perl Kingsley can be found on numerous sites on the internet by doing a simple search.