special needs parenting

If Comparison is the Thief of Joy, Then Count Me Out

As a blogger, I follow many bloggers, it’s what bloggers do. I love reading about other families and lifestyles and I often find myself nodding in agreement with the words on the pages, sometimes daubing away tears, other times spewing coffee with laughter; and when I read those, it makes my day.

On the flip side, there are many headlines that I scroll right on by.

When I do, it’s a bonafide case of “it’s not you, it’s me” I can be a little touchy, you see.

Actually, I’m not certain that touchy is the right word. It’s just that the normal challenges of parenthood elude me. When I read about potty training a 3-year-old (as challenging as that may be) I can’t relate, it never has been and never will be my challenge (Hannah was so the world’s easiest child to potty train, and the rest were a whole different ballgame). Just insert whatever normalish rite of passage parents are struggling with, and picture me making this face and scrolling right on by.

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Most bloggers strive for relatability, and that relatability is for the masses, the typical families with the usual struggles and normal crises.

Which means that they don’t relate to me at all, not even the tiniest little bit.

In a 16 year series of combined baby steps, normal steps and a few truly giant leaps, we have left behind any semblance of relatabilty in exchange for quirkiness and complexity.

This leaves us in a situation of continually trying to help people see us and make a bit of headspace for us where we are. Wading though the depths of normalcy on a daily basis, which reinforce just how unrelatable we have become. It’s a constant, relentless cycle.

Social media is like that for parents of kids with complex needs.

There’s this dichotomy for us when we log on and scroll down. My feed is a mix of folks from my family, high school, college and my former jobs, so there’s a pretty sizeable chunk of average in my timeline. That average is foreign to me, and often reminds me of just how many ways we veer away from average. Another contingent is my cadre of parents of complex kids. The ones whose lives are just as unusual as my own. Connecting with them feeds my soul. I write for them, and I read their posts and breathe in the connection.

In order to keep balance, though, I tend to avoid much of the Normal McNormalson that pops into my life via my screens. Leading our family through each day is a feat in itself, I don’t need the constant comparison to slow me down.

Keeping up with the Joneses will never happen. You know how they say that good fences make good neighbors? The same is true of the social media and blogging neighbors. I maintain a virtual privacy fence loaded up with latches and locks, not to keep my family in, but to limit the potential for constantly comparing and contrasting on my end.

That yellow tulip, popping up right there in the midst of all the purple makes for great contrast. It doesn’t blend, it doesn’t match, it just stands out. The tulip almost certainly hasn’t a care in the world about it’s mismatched setting, and likewise, I prefer not to fuss about all the purple flowers surrounding our singular yellow bloom. Our blossom is lovely in it’s own right, and needs not concern itself too much with the vast purple expanse surrounding it.

If comparison is the thief of joy, then I don’t think it’s a game I need to play. Protecting my heart and shielding my joy makes life around here so much sweeter, which is just the way I like it.

autism · Down syndrome

What is Autism and Why Does It Matter to You?

Today is World Autism Day. There are specific activities involved, such as wearing blue, but beyond that, why should you, the average internet surfer, give two hoots about autism awareness and acceptance? Why would it matter to you?

The diagnostic criteria for Autism Spectrum Disorder (ASD) specify that to be diagnosed a person has to have social deficits. Added to this are the criteria regarding sensory processing and rigidity of behavior.

In plain English, what this means that approximately 1 in 68 people have significant social deficits and sensory processing difficulties to be considered Autistic. The disorder occurs on a spectrum from mild to moderate to severe.

Because it’s a spectrum of presentations, you might see one person with Autism who is highly intelligent with more social challenges and rigid behavior and another who doesn’t speak at all, has limited to no social skills and constant sensory avoiding or stimulating activities (or a combination of avoiding and stimulating), and both of them are considered Autistic.

No two people with Autism are alike. When you know a person who is on the Autism Spectrum, you might think you have a pretty good idea of what Autism is, but really, you only understand that person. The next person you meet with Autism might have very some different personality traits, behaviors and social skills.

My son, Ben lines up his cars all the time, lining items up is a common Autistic behavior.

This is where awareness and acceptance come into play:

  • If someone says they have Autism, believe them. Just because they aren’t like someone else you know with Autism doesn’t mean that they don’t actually have it. To get an Autism diagnosis, a person goes through clearly defined standardized testing conducted by a qualified clinician, and chances are that you are not qualified to decide if the assessment was correct.
  • Be aware, when you’re in public that you might encounter an Autistic person. If someone you meet seems to have unusual social conduct, give them the benefit of the doubt and accept them as is.
  • Autism meltdowns are very real and very challenging. Don’t judge the person melting down or the people with them, just give them space and a smile.
  • Keep advice to yourself. Sure, your cousin’s neighbor has Autism and a gluten free diet helped them and your coworker calms his Autistic son with essential oils, but those are two different people, and what works for them isn’t a magic fix for all things Autism related. Most people with Autism and their families have accrued great resources and have tried many things, so chances are good that your suggestion isn’t new to them.
  • They might be using medications, natural remedies, or therapies to manage their Autism, and whatever they’re doing is between them and the professionals they trust to give them direction, it’s not for you to judge their approach.
  • Just like anyone, Autistic people (and their families) want to be accepted. If you want to be helpful, read up on Autism and be a safe and accepting person. It’s really the best way to help. The Autism Society is a great place to start if you want more information.
  • As a parent of a child with Autism, I have been both chastised and blessed by strangers in public, but mostly just ignored. Honestly, being ignored is probably the easiest for us, so don’t feel like you have to help someone who is struggling in public in order to be an accepting ally.

What is really helpful, is knowing that my son is accepted, just as he is. And anyone can do that.