Redefining Expectations

I got the sudden urge to start cleaning every corner and closet of our master bedroom this weekend. Well, if we’re being honest, I ran out of piles to put clean clothes instead of putting them away and had to sort through the mountain and redo drawers and closets and stumbled upon some piles of stuff along the way. I’ll stay transparent. One of the things I found was Caleb’s baby book (which I appear to have stopped putting things in at approximately 8 weeks old. He’s going to be 4 this year. Ari doesn’t even have one. I assume at this point her ultrasound pictures are at the bottom of an old purse somewhere. Mom of the year, here.). I opened it up and saw cutesy things like his pregnancy announcement, footprints from the hospital, pictures in itty bitty onesies……then when I could pick my melted heart off the floor it made me think about something……

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…..things kind of didn’t turn out how I expected them to.

Caleb having Autism has now been our truth and our reality for the majority of his life…..I’ve almost forgotten those early days when it wasn’t even on my radar that he’d ever have anything other than typical, day-to-day kid challenges ahead of him. You know…..perfecting his jump shot, getting up the nerve to ask out the pretty girl from bio class, passing driver’s ed. Now, I worry about almost everything. I worry that I’m not doing enough, that I should be doing “this” not “that”, and mostly that the rest of the world may miss out on everything this amazing little boy has to offer because he has a hard time finding his words, learning the way everyone else learns, and forming social relationships. Those aren’t little things to worry about. It’s everything.

So, what I learned, was that I had to redefine my expectations. And I’ll admit that that wasn’t as challenging for me as it potentially is for others. I worked in pediatric rehab for years before Caleb came into my life- I spent all day every day celebrating small successes. I was used to taking a “slow and steady wins the race” approach and I knew that a kid I may be seeing today would likely make so much progress over the course of a decade that no one would ever believe that there was a time they needed to come see Ms. Erin two times a week. I understand that’s not the norm. I also understand that when the only child you know who has Autism is your own child that it’s a lot scarier.

If it helps, I’ll tell you all that all those glorious things that I got to be “used to” before Caleb came into my life didn’t “fix” anything for me. It didn’t give me rose-colored glasses. If anything, it mostly just took the edge off, is all. Like a cheap glass of gas station Moscato after a hectic day. Here are the three biggest things that Moscato and experience helped me redefine and establish a new set of expectations for:

Social Media Bragging:

Oh, your child is starting to learn words in their second language? Well mine said “green” 6 days ago. You potty trained your toddler by 18 months? Our goal is by Kindergarten. From the time Caleb was 1 until after his second birthday I scrolled through videos of my friend’s kids that popped up on my news feed before they could automatically start playing or hit “like” without hitting “play” to at least give the facade of support. That didn’t last forever. With acceptance comes pride. In yourself and in proclaiming how amazing your child is for the world to hear, even if the amazing things he’s doing, your friend’s kids were doing 2 years ago. And do you know what I’ve found? He’s one incredibly loved little boy because I’m certain there isn’t a single person I know who isn’t doing backflips about that child saying “green.” Give yourself some time, give yourself some grace. Expect there to be joy in the little things, make an Instagram post about it, and see how many people rejoice right alongside you.

Relationships:

Mine and my family’s. Mine and my husband’s. Mine and my child’s. This topic deserves it’s whole own post one day because leaving it at a measly paragraph feels borderline insulting. Do you know how exhausting it is to have to educate pretty much everyone you meet on why your child is how he is? “Please don’t scold him for throwing blocks- he was fulfilling a visual stim.” “He has trouble with eye contact. Do not grab his face (unless you want me to punch you in yours).” The advocacy never stops and it can be exhausting. The divorce rate in this country is already unsettling and did you know that it’s even higher in parents with a child with special needs? Caleb has an amazing daddy who is also an amazing husband but Autism has CERTAINLY made its way into the middle of arguments in this house. But do you know what’s the hardest expectation to redefine? The relationship I expected with my son. I expected that we’d sit on the couch watching Finding Nemo and I’d look at him and say “I love you, Caleb” and he’d look at me and say “I love you too mommy.” But that’s not the reality. I tell him “I love you, Caleb” and he keeps lining up his trucks. But a few hours later he’ll come climb in my lap and get his face as close to mine as he can and give my cheeks the biggest squeeze his little fingers can muster up and THAT is his “I love you too.” Squeeze away, my love. These cheeks are yours, son.

Thinking About the Future:

I’ll admit that I’m still working on this one. I’m optimistic and at the risk of sounding like a cheesy motivational poster you see hanging in the back of a preschool classroom with a kitten holding onto the end of a rope, I truly do believe that if we continue working steadily and just hang in there, we’ll get to the same end point that everyone else gets to. I would be lying though, if I didn’t tell you that things like girlfriends and the potential of maybe not having one, didn’t make me nervous. You know that space that’s just below your diaphragm and right above your stomach? I call that the mom gut. (It may really be your liver, I don’t know- I didn’t take anatomy). My mom gut always starts feeling nervous when I think about things like that. I’m working on reminding my brain and mom gut to get on the same optimistic page when I think about Caleb 15 years from now but it’s ok if the future makes you nervous. I’m trying the hardest to make this the place where I don’t redefine expectations of my son, but of myself. I expect my son to grow up to be smart, social, independent, and to have a job and family all his own one day. But I’m also going to expect myself to remain positive, believe in him, stay the course, and just. hang. on.

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This Ain’t Holland, Ya’ll

So, there’s this story that’s often told to families that compares receiving an Autism diagnosis to taking a trip to Holland when you planned your entire vacation around going to Italy. You learned Italian, got excited about the cuisine, and then when the plane lands, you walk outside and find yourself in Holland instead of Italy

Autism ain’t Holland, ya’ll.
One- let’s not compare Autism to a vacation. It’s a job. Lots of work. You don’t get a break when you live Autism. Two- if you went to the Italy Trip Store and they told you, “My bad, we gave your ticket away but here’s some Holland from the stock room,” it wouldn’t be such a bad deal. So you trade pasta for fish, the Coliseum for windmills, and wine for tulips. (Well, maybe that last trade sucks but you’re picking up what I’m putting down). Essentially, going to Holland instead of Italy is just doing one fun thing instead of another fun thing.
Autism isn’t fun. It doesn’t rock my socks. I don’t love it to the moon and back. I could think of 2349820420984098423 other things I’d rather do. My son, however, IS fun. He’s the cat’s pajamas. I adore his stinky self. I tell him daily he’s the most perfect son. But HE is not Autism.
I don’t agree that it is advantageous to advise parents who are receiving a new diagnosis that Autism is like going to Holland instead of Italy. With that said, I do understand and can even appreciate the sentiment behind it. Autism is not the worst thing that can happen to your child….it’s simply something different than what you thought was going to happen. There are awful, terminal things that can happen to our children. This is not like those things. I understand why this anecdote is recanted time and time again- I’ve personally heard it for years. But I also don’t want people to feel trivialized. Everything is relative. It’s ok, when you get a diagnosis, to feel upset and sad and mad about it. Just because it’s not “the worst thing that could happen” doesn’t mean you’re not allowed a minute to feel like it is.  What matters, ultimately, is where you end up. If you find acceptance and make the right steps to help your child, you’re allowed to feel however you’re going to feel along the way. Being told I’m “going to Holland instead of Italy” makes me feel like I’m being cut off in the middle of a feeling-like someone is saying “Eh eh eh eh….feel this, not that….it could be worse!.” I’m certain these are things people say when they do not have a child with Autism. You have to feel things in order to work through things.
Let’s advise parents differently. Let’s advise the truth- it’s going to be hard sometimes. It’s going to be a lot of work. But it’s going to be so rewarding to see the hard work pay off and ultimately, everyone is in fact going to be ok.
It felt like Afghanistan in the beginning. I haven’t found Holland yet but we seem to be sitting somewhere in the Florida Keys right now. A lot of days are sun-filled and fun but sometimes hurricanes still blow through. And when they do, we simply pick up the pieces, fortify the foundation, and wait for the sun to come out again.
Where are you all right now?