Neurodiverse Parenting: One Year In

It’s been a little over a year since we received Avery’s diagnoses of Level I Autism and ADHD and there have been a lot of feelings packed into 365 days. I always come back to the fact that a diagnosis and label doesn’t change a thing about a person. If anything, it only opens more doors in terms of services and resources. In general, people still tend to have a sorrowful response when they learn that Avery has Autism. However, for us, we see it has a set of superpowers that she has and will continue to have for her whole life.

This past spring was the first time that we had an open discussion with Avery about her Autism. She knows that she has severe ADHD and that she takes medicine to help her focus and regulate. However, Autism isn’t as easy to nail down from a kid's perspective, so we held off on diving in on that one. When we did talk about it this year, though, we shared that everyone’s brain has a bunch of wires in it that help us think, feel, and act, and that some people’s wiring looks a little different.  Avery’s diverse wiring gives her the superpowers of unmatched empathy, an incredibly sharp memory, a musical mind, and many more superpowers that not everyone else has. It also means that sometimes she can be very rigid and that her flight or fight response can be very strong in situations where it isn’t for other people. Things that aren’t triggering for other kiddos her age might be very triggering for her, and she knows that we’re constantly developing systems together as a family to help us navigate the situations that prompt the big responses. I think anyone who knows Avery will attest to the fact that she is one of the biggest lovebugs that you’ll ever meet. She emotes in a big, big way across the spectrum of emotions and at the end of the day, we wouldn’t change a thing about her.

 

From a parental perspective, there are so many lessons that we continue to learn. Here are some of them:

- It’s hard (nearly impossible?!) to do this alone. Finding specialists around your child’s needs is life changing. Between Avery’s psychologist, occupational therapist, speech therapists, psychiatrist, etc., we have found such a strong network of support. It never escapes me how privileged and fortunate we are to have found such incredible specialists that have helped us navigate uncharted territory. Avery knows that each one of these adults is there to help her.

-Social situations are often challenging. I wish that I could say that this only goes for new social environments, but it doesn’t. Some days, even the most routine situations can set off a five alarm fire and it’s just life with a neurodiverse kiddo. Families that know us well know that there may be days when we simply must bolt and while it’s not ideal, it’s life. It’s unpredictable and can be messy.

-Setting up systems around recurring triggers is super helpful. Some of our biggest triggers are weather, bugs/birds, and big crowds. We almost always have the weather app at our fingertips, we will often show up on the earlier or later side of events with noise cancelling headphones in tow, and in terms of bugs and birds…I’ve got nothing, ha! If anyone has any advice on the last one, we’re all ears!!

-Neurodiversity is hard on a marriage. Yes- I said it! Just like any situation that requires endless attention and one that can create unpredictable stress at any given day and time, it takes a toll.  The most difficult part for us is the unpredictability that every day brings because you constantly feel like you’re walking around on pins and needles. CP and I have had our moments where we are at our wits end with each other and throw our hands up in the air (and then take some space).  At the end of the day, though, there’s absolutely no one else that I would want to have as a partner in neurodiverse parenting. We respect and create space for each other’s ideas and opinions and know that we’re both human beings with feelings, too.

-Sibling life can be tough. I think about this a lot with Harper. In a lot of ways, having a neurodiverse sister has made her a more flexible and adaptable kiddo. She’s also subject to a lot of unjustified outbursts and erratic behaviors, though, and it’s hard not to worry about that.  That being said, Aves and Harper have an incredible bond that is remarkable to observe (especially as an only child myself). They are one another’s biggest cheerleaders and are fiercely protective of each other. It’s important for us to remember, though, that Harper needs support in ways that are less obvious but just as significant.

- Not everyone will understand, and that’s okay. The longer we’ve been doing the neurodiverse parenting gig, the better I’ve gotten and just letting it goooooo. The energy spent on worrying about the stares, comments, or advice given from others is simply not worth it. Period.

-Our circle is small but fierce. As an extrovert myself, I’ve had to adjust expectations around involvement in activities and social circles in general. Frankly, it’s been a bit of a relief! We know that Avery thrives in small groups with familiar people and it has taken a lot of pressure off buying into the pressure cooker of commitments that is Northern Virginia.

-Don’t let others downplay your situation. We’ve had some well-meaning people say that Avery doesn’t “seem” Autistic. While I believe the comment is meant to be comforting, no one knows the intricacies of a neurodiverse child and family other than that family. Avery masks *incredibly* well in certain situations, which is both a blessing and a curse. It’s always helpful to lead with an open and empathetic heart, knowing that many families are struggling on different levels behind the scenes (whether it involves neurodiversity or not).

-It’s okay to resent your kiddo at times AND love them with every cell of your being. There have been many times when I’ve wondered how different our life might look without a child with Autism. It’s a natural wondering! Avery is fiercely attached to me, despite so much work around boundaries and space between us. Does this mean there are days when I nearly lose my mind on her? Absolutely. Yet, I wouldn’t change a thing about Avery or our family. In a lot of ways, she’s the best thing that has ever happened to us.

-The road will be ever-changing. The triggers now may not be the triggers next year and, conversely, the things that work this year may not work next year. It’s hard not to ponder what life with a neurodiverse kiddo will look like down the road. I joke with Chris that Avery will be living with us when she’s 40 because she’s so attached to me! At the end of the day, though, our family’s love will always carry us through anything, along with the help of our extraordinary support system. We’ll weather the highs and lows with a deep respect and understanding for one another, which is all that any of us can ask for in this life.