I have been debating whether or not to write this post for about two months.
I mentioned in my very first blog post that my husband is a very private person, so I wouldn’t necessarily be writing about him much. I’m pretty comfortable with sharing stories and experiences about my life, I like relating to other people who may be going through similar situations, and I find writing to be very therapeutic. But, he’s not the type that wants it all “out there” like that, and I want to respect that. I will never turn my blog into a husband-bashing session. I have become more aware of the fact that some of my posts may slightly offend/annoy a few readers here and there…and I’m okay with that. However, I am NOT okay with writing something that makes my husband uncomfortable or puts him in a negative light. I don’t think he realizes how much it means to me that he reads every post AND likes each one (or so he tells me).
Which is why I thought long and hard before writing this one. This is my 30th post, and it will be the first one that I ask him to read before I hit “PUBLISH.”
In a way, I saw the words “Easton has autism” coming months before I heard it officially. The signs were there. I had a gut feeling. I could tell by the looks on the faces of the people observing him, the looks they gave each other, the knowing nods from the experts as I explained some of his behaviors, the writing down of things each time he didn’t do something that he should be doing. But that didn’t make it easier to hear the diagnosis. No parent expects to have a child with special needs. I was completely willing to face the challenge we had ahead of us, but I was emotional. I was worried. And I was accepting.
I have said this before and I’ll say it again: it drives me CRAZY when I hear people say that they were “devastated” by their child’s autism diagnosis. Let me clear something up. When I say it was hard or challenging or emotional, I do NOT mean it was devastating. A child getting killed in a car accident? DEVASTATING. A child diagnosed with cancer? DEVASTATING. A child diagnosed with autism? Not so much.
But it WILL change your life. And along with getting that official diagnosis, there was another aspect that made it even more difficult. An aspect I’ve really never talked about with anyone, other than a couple of close friends: my husband did not accept the autism diagnosis for several months.
On the way home from that 2 year check-up, the one where Easton’s pediatrician sent me home with the phone numbers to call for an evaluation for autism, I called my husband. He asked how his check-up went. I said, “Well…she thinks he needs to be evaluated for autism.” Silence on the other end. I started crying. He said, “He’s fine.”
The words “he’s fine” seem so trivial to most, I’m sure. Yes, actually, Easton IS “fine.” He’s happy, he’s healthy…but that’s not what my husband was saying. I know my husband. I knew what “he’s fine” meant, what he was trying to say. He was saying, “he doesn’t have autism.” It was his guy lingo for “there’s nothing wrong with him.”
The first thing I did when I got home from that 2 year check-up was…you guessed it! I Googled “Autism.” This is generally not a good idea, but there is some good, basic information on Autism in the first few links that pop up. I would try reading some of the “signs” to my husband. He would either not say anything, or go right back to “he’s fine.” I eventually stopped bringing it up.
I made the phone calls. I set up the meetings. I filled out the paperwork. I watched them observe him. (I’m not saying that in a “Oh, look how much I did…I’m just stating a fact.) My husband did come along to the meetings and observations at the Munroe-Meyer Institute and he did help me answer a lot of their questions.
The official “reports” came back from Omaha Public Schools and Munroe-Meyer. There was no question about it. They all said the same thing, “Autism Spectrum Disorder.” In fact, the OPS psychologist that came to observe him for an hour at his child care center said to me, “I have to go back and put all of my observations into the computer so it can officially be put into our system…but I can tell you right now it will come back that he has Autism.” I actually really appreciated her candor. But I also had to finish my work day after she said it. I felt like I was in a fog the rest of the day, not wanting my emotions to come to the surface.
After the diagnosis, my husband didn’t really talk about it. EVER. Every time I would try to talk to him about Easton, he wouldn’t say much. A couple times, he mentioned that he didn’t want Easton to be “labeled” in school. This whole “label” thing confuses me, to be quite honest. Will Easton have the “label” of “autism” in his file when he starts school? Absolutely. Why wouldn’t we want that? Won’t that lead to more understanding and resources for him? Where would we be without that “label” which gave us speech therapists, autism programs, and his special needs preschool? It’s part of his identity, so therefore, I guess it’s a label. I just don’t understand why parents think that’s such a bad thing.
There was one particular “conversation” (I put that in quotes to avoid the word “argument”) we were having in which it finally came spilling out. He said, “I don’t really think Easton even HAS autism.” Um….WHAT? This was MONTHS after the diagnosis had been made and Easton had already started in his Toddler Autism Program through OPS. I didn’t understand how he could say that. TEAMS of people diagnosed him and placed him in an autism program. He’s actually saying they’re WRONG? (I wondered to myself, but didn’t say it out loud, how he would feel, as a “computer guy,” if he gave someone a clear, factual answer for why their computer wasn’t working, and they looked at him and said, “Oh. Nope. That’s not it.”)
I was stunned. It felt like I’d been hit by a ton of bricks.
I felt completely and totally ALONE.
I tried to keep myself calm, but I’ll be honest…I was angry and worried. I was left speechless for a couple minutes, then I looked at my husband and said, “Then WE have a problem. A big one. Because if WE are not on the same page with what his needs are and you don’t accept his diagnosis, this is not going to work. Our son has AUTISM.”
We didn’t talk to each other much for several days after that conversation. If there’s one thing I’ve learned about my husband in the last 10 years, it’s this: Don’t push it. He will talk when he’s ready, when he’s worked things out in his head.
He finally did. He said three words that I don’t hear very often: “You were right.” To this day, I don’t know what made him come around, but maybe my words actually sunk in. It took a while, but he was finally there.
It might sound crazy to some, but the first time I heard my husband tell someone else, “he has autism,” when talking about Easton, I actually found myself smiling, and I choked up a little. That was HUGE. I realized I had never heard him actually say those words, and I wasn’t processing the fact that it was because he hadn’t accepted it yet. Hearing him say, “he has autism” meant one thing: acceptance. Which meant WE were finally on the same page. (We were not only not on the same page for a long time, we were not even in the same BOOK.)
A couple of close friends asked me recently how my husband feels about the reactions from strangers in public when it comes to Easton. They said it seems like I handle it so well, but wondered if it bothers my husband more than it bothers me.
The question surprised me, because if you were inside my head when I see the reactions from strangers regarding Easton, you would NOT think I’m handling it well. I don’t feel like I handle it well, but I guess I do HIDE it well.
The answer to their question was…no. My husband is always the one reminding me, “it doesn’t matter what people think of Easton or of us as parents. We know why he’s acting the way he is and that’s all that matters.” He also asks me from time to time, “why do you CARE what other people think?” The truth is, I DO care what other people think, and I don’t know why. I wish I cared less. But it’s nice to be reminded that if people judge, or stare, or make comments…well, that’s THEIR problem, and a testament to THEIR character, not ours.
My friends also asked me if I worry about what the future holds for Easton and if situations regarding autism will become more challenging as he gets older. It was then that I realized I must be an EXPERT at hiding my feelings, because I actually lose sleep over what the future holds for Easton and the challenges he will face. I just try to take it one day at at time. And again, my husband doesn’t worry about that like I do. He always says, “worrying won’t help anything.” And Lord knows he doesn’t lose a WINK of sleep over it.
Thank goodness my husband isn’t just like me. One stressed out parent is enough for one household.
He and I are VERY different people. I happen to think that’s what makes our marriage work. But…there are still conversations between us that end in the words, “We’re just going to have to agree to disagree on this.” But luckily, Easton’s autism is NOT one of them anymore.
This is definitely the most personal situation I’ve posted so far. Why did I do it? Because I’m guessing I’m not the only one who has been through a rough time in my marriage. I’m guessing, if there’s ANYONE reading this who is the parent of a child with autism or other special needs, that they might have had trouble getting on the same page with their spouse. Or, maybe someone reading this is having trouble accepting their child’s diagnosis. They might be scared. They might be in a little bit of denial. Everyone handles challenges differently. But, it was absolutely VITAL that my husband and I BOTH accepted Easton’s diagnosis so we could move forward together.
I’m no expert, but I can tell you this: you HAVE to accept the diagnosis if you want to see your child make progress and succeed. Acceptance leads to a better understanding of your child.
I can tell you that our marriage became stronger, and things with Easton got a little easier, once we got on the same page, same paragraph, same sentence.