Sundays in our home are the time we spend together as a family, with our faith and time focused on each other. There’s no therapy, school, work (most times…), or activities that require our usual “divide and conquer” approach to life with mommy and daddy scurrying off miles apart in opposite directions. While Sundays are typically a bit more relaxed, the divide is still there, but maybe a bit smaller.
You see Addie, every Sunday we gather ourselves - OTOD style,and head off to church. Our faith is an important foundation of our family, and being able to gather in fellowship with our family and friends is a beautiful blessing. Unfortunately, this causes you some sensory distress, and if I’m being honest, causes me anxiety too.
This is a very common situation for special needs families. When you are different, its as if you have a spot light on you. For example, sometimes your behavior can be seen as a tantrum,when in reality it’s a meltdown. I feel the need to give an explanation, because I can’t bear thinking of assumptions being made about you, my sweet girl who is really trying her best.
For as long as I can remember, well before any sort of diagnosis,you’ve struggled being in church or large enclosed spaces (such as gymnasiums) for that matter. Over the years I’ve learned that the acoustics seem to send your hypersensitive auditory system screaming for the hills when you hear sounds bouncing off the walls. It would seem like an easy fix - put some headphones on! Right?
But it really isn’t that simple, especially since you don’t like your head touched. We generally find ourselves sitting in the lobby, attempting to listen to mass before ultimately exiting the building due to your patience having reached its breaking point.It is one thing to have a hungry, crying baby, it’s another to have a overstimulated, stressed out 6 year old screaming or yelling “all done! all done!”
While sounds echoing in large spaces are challenging, you also seem to struggle with the sound of babies crying. If there’s one thing I know, when a baby cries in church they go out to the…yup, you guessed it, the lobby. Right where we are usually holding court.
Justified or not, I’ve spent the last few years on again, off again avoiding the struggle and staying home with you many Sundays, while the rest of our dream team went to mass. The irony to all this is our faith is what gets us through the many challenges we face on this journey, yet I struggle with having you in a place that should be a safe, nonjudgmental atmosphere, but at times is anything but.
In the last month or so, our parish was blessed with a beautiful new church (or a “real” church rather – our mass has been celebrated in the gymnasium for years until now). With this new chapter upon us, we thought it would be a fresh start to ease you into our Sunday ritual that we so love.
There’s a couple of facts that make this challenging.
One - You stim. Yes, it’s a must for you. Almost as important as breathing. Your stimming is accompanied by a distinct and loud vocal noise. It’s so recognizable that in fact recently at the grocery store your TA from last year heard it and knew it was you from aisles away (side note: she was excited to see you, as were you to her!).
It’s uncontrollable and done everyday - rain or shine. While I know very well that the church is as much ours as anyone else’s,and all are welcome…you can get quite loud and it may become distracting for others. This causes me great anxiety! Let us not forget your favorite echolalia from Princess and a Frog! You never know when you’re going to unexpectedly let out a Princess Tiana-type scream!
“Ahhhhhhhhhhhhh!!!!!!!!” Not very reverent.
On a number of occasions Bob (everyone’s favorite usher) has come to me to say good morning and reminds me every time “all are welcome” as he sees the great divide of our family – some inside church and others (dad and you) left to sitting (or jumping and spinning) in the lobby. We have become accustomed to drowning out your stimming sounds and can filter through conversation, but for others that are not faced with this daily, it can be hard to do, and perhaps frustrating in a time that is generally seen for quiet reflection.
Last week, we took baby steps in bridging our usual great divide. I sat in church with Clara and Gabe, while daddy sat with you in the lobby. We were in view of each other. You were sitting ever so nicely. Quiet and calm. I could see out of the corner of my eye every now and again a head turn around in your direction, I’d then listen closely and sure enough you were stimming away. Happily, might I add. Yes, I can tell the difference. Daddy said you never asked to leave and he never had to take you out for naughty behavior or acting out.
You either sat quietly, or were stimming. I think you requested a few times for dad to spin you – to which he declined because it wasn’t an appropriate place to be whirling your “99% on the growth chart” child around. Or you were pulling daddy closer to you, squishing your cheek into his nose because you like it when we sniff your face. Yes, you read that right, you love it when we “sniff” your face. To each their own my love… no judgement here. But it is a sight to see daddy, nose squished to your cheek sniffing away while you smile in jubilation.
Seeing that your behavior seemed to be on a positive note, daddy walked you up for Communion with him, something we rarely do because we never know if something is going to trigger a death drop to the floor for you. Luckily that didn’t happen and I only giggled when I could see your tiny hand reach up repeatedly trying to take the cup away from daddy as he tried to sip it. You followed daddy out to return to your lobby spot. As the closing music began to play I turned around to see you happily jumping and stimming! Truly rejoicing!
We did it baby! We made a whole mass without a meltdown, or “exit out the side entrance in shame” encounter.
Once the church had a cleared out a bit, you walked in to stand in the pew next to me where I was talking with a friend of ours. I watched you survey the whole space as if you were drafting a picture to memory. You stimmed a few more times, gave our friend a smooch, then politely said “all done” while shoving me to leave.
While our church that we know and love does not have a “special needs” mass (perhaps one day in the future they will), we made baby steps in bringing our divide closer together this Sunday. You may not have sat in a pew, but there were no sensory meltdowns or needing to retreat to your usual comfort of the outdoors. While your noises may never go away, and we may get a few awkward looks for smelling your face, I pray people will become more familiar with your presence and who knows, maybe someday soon all five of us will be sitting next to each other, in a pew of our new beautiful church.
You did a great job this week Ad!