You may find this funny to believe, but there's a lot of people who are curious about our life. Most often we’ll meet people who know someone with Autism, but their curiosity is peaked because the person they know is typically along the lines of “their brother in law’s – 2nd cousin’s – neighbor.” Not exactly close relations here. The ins and outs of navigating what can sometimes feel like endless challenges sprinkled with joy can be, for lack of a better word – fascinating. What does our “normal” look like? How does it differ from theirs? What they may not know is sometimes we are equally as curious about them and what their life might look like.
You see Ad, as long as I can remember - before any of your diagnosis’s, days filled with therapy, my vocabulary being upgraded to complicated medical jargon, and the like, you've struggled out in public, and particularly in church. Our Catholic faith is important to us, so this struggle tends to stand out the most. Even as an infant you seemed to show great distress from being in the confinements of the church, so we'd make our way to the cry room where most often the distress from the cries of other babies (ironic, no?) would escalate to your reaction to the point that dad or I would inevitably just walk the halls or go outside to the church garden. Our party of 5 was rarely, if ever together during mass. For the first few years we didn't know that this was related to a bigger picture of sensory issues for you, but now it makes so much sense. Church has unique sounds (and echos), lights, and even smells that are different, and yet we were naive to any of this.
Recently I read an article written by Ellen Stumbo in the Charisma News that stated a staggering 80% - let me repeat that - 80% of special needs families don’t attend church services. 80%! I’m convinced that this is not because 80% of them don’t have faith, my goodness Addie, sometimes our days rely heavily on the two J’s (Jesus and java) just to get us through! My guess is that it’s really a number of things, and it generally starts with the challenge of even getting out of the house on time. Once that challenge is accomplished, we typically still show up to mass late fueling even more stares. It’s true, people stare. They stare everywhere, but it seems as though they stare more at mass than other places. Maybe because its typically an otherwise quiet setting, maybe because they at first interpret our noisiness as a lack of respect, but either way – there is an abundance of staring. It’s the truth, which is possibly another reason families might choose not to attend. It’s never a great feeling being the spectacle. Not blaming them, it’s natural. When something or someone is different. A giant 7yr old stimming and rocking an equally giant set of headphones with no boombox – yep, that can leave some wondering. The list could go on, but in a place where we should feel the most accepted and loved, sometimes we feel a little more uncomfortable than anything else.
Don’t get me wrong we LOVE our church. But unfortunately, sometimes you become overwhelmed by all that comes with it. Although headphones have continued to be a great blessing, and increased our ability to do more these days, sound is not the only one of your senses that struggles.
Your involuntary sounds, stimming and constant movement is very 2nd nature to us. We’ve grown accustom to distinguishing your sounds between good and bad and can accommodate your needs accordingly. But for those who don’t live this life, those who haven’t been blessed with this type of special needs “language” if you will, it can be greatly distracting, and they may find it hard to focus. I hate to say it, but to others they may see our presence as annoying.
Being respectful to those that haven’t been blessed with this way of life, you’ll generally find us in the lobby, sitting together as a family trying to take in as much as we can. Eventually we’ll take a deep breath and walk in to receive communion. I’ll say a little prayer that we can just get through and blend in with the masses. Insert a change in lighting, smell of incense, swarms of people - your response can be unpredictable. With every sound you make, my peripheral vision lights up - like popcorn of heads turning to see what the ruckus is. I see it, I feel it.
We will be reminded that all are welcome by our favorite usher Bob, but it’s always a reminder that others don’t speak the same language as us.
Our society has been groomed somewhere along the lines that children should be seen and not heard. Sad thought really, but I see it every week. Our church doesn’t have a cry room – kudos to them. But we sit in the front lobby where I see a constant flow of babies and toddlers come from inside the church because they are crying or unable to sit still. These kids are the future of our church, why did they feel the need to exit the mass? Did they feel they were interrupting anyone, did they see and feel the stares, were they embarrassed? Did these parents unknowingly get a small glimpse into our life and feelings?
Well Addie, we got our glimpse this week.
We were invited for a very special opportunity to celebrate our faith! Our neighboring church, St. Andrews of the Apostles, was hosting a special needs mass with Bishop Luis Rafael Zarama. Having only heard of these masses, and never been, I was VERY excited (like Christmas day excited) to experience Church: One Team, One Dream. My family all together IN the church, like an actual pew, participating in mass.
Wow Addie! This was going to happen! Daddy and I were racking our brains trying to think of the last time we were all in church together like this… we simple couldn’t remember, but it must’ve been some time ago when you were still being hauled around in a car seat.
Dressed, headphones on, and running only mildly late – let’s do this!
We arrived at the church, and you were offered sensory friendly and soothing toys right out of the gates for mass! You happily chose a pink squishy toy and then we preceded to find our seats. In a pew. All 5 of us. Together. In the church. Not in the back for an easy exit, but near the front. Cue mommy getting emotional.
There we were sitting through mass. You stimmed and bounced and made noises, but no one was bothered. No one turned to see what was happening, no one was staring. My peripheral popcorn wasn’t popping. To everyone here this was their normal, our language.
It wasn’t without challenges and during communion something agitated you, making sure everyone knew of your displeasure - you let out a few powerful screams. Addie, for the first time ever in a public place, I didn’t feel this great need to calm you down and apologize for the disruption (it was really loud). No, we allowed you to work through it and we continued on. It didn’t feel like we were a spectacle, we were just a perfectly imperfect family taking Communion.
So Addie, we went to church, and experienced a small glimpse into our curiosity of how others see it. It was everything I had imagined and more. But perhaps it wasn’t just a glimpse of what others see, maybe it was really a glimpse at our days ahead. We’ll get there Addie.
I love you.