Practice Makes Progress

Dear Addie,

There are hundreds, probably thousands of parenting books out there, but if there's anything I've learned from any number of those books, it's that parenting is a learn as you go journey and truly your very own journey at that.

Parenting a child with a significant amount of sensory distress can seem like you're trying to parent in the most unfamiliar place -- like Mars!  You have an idea of where you need to go, but you can't get your feet firmly planted on the ground long enough to take off in the right direction at any significant pace.

Advice from other parents can be quite helpful, and if I'm being honest there probably isn't anything we haven’t tried via suggestion, but when it comes to autism or sensory processing disorders (you have both), no one child is the same. To manage each sensory distressor can get challenging. Rub an oil here, put your left sock on inside out, put pants on right leg first, eat this not that - we’ll try it all, but at the end of the day the fact remains there's no one size fits all approach here.

Everyday places from school carpool, the grocery store, birthday parties, a doctor office waiting room, to the gas station - yes the gas station (you have separation anxiety as soon as I step out of the car), can be stressful for you to say the least.

Just the thought of taking you somewhere which may cause a sensory assault on your processing system is enough to make me want to resort to being full on introverts and never leave the house! But then there's that whole ”exposure is key” thing. Ugh.

Some days I want to find who blessed us all with this piece of advice for autistic families and say ”seriously - you got anything else, because this exposure thing is for the birds!”

Daddy was out of town this weekend and it was Sunday which meant we would be heading to church. Mark it - mama was adulting solo. There would be no divide and conquer if things went awry, just a bag of tricks, a deep breath and a quick prayer.

Our faith is important to us, and with that comes my relationship with it.  It's a healthy dose of questioning, and yet I depend heavily on it.

There's a sense of peace we enjoy from going to church and sharing fellowship with others, but church is hard on you. There's auditory distress in every room we go in, and headphones only do so much. We don't have a special needs mass at our parish, but they really try to bring home the ”all are welcome” mentality. While we appreciate that sentiment, you stim and make (loud) noises every 25-30 seconds and with your most recent go-to noises sounding much like a tornado siren or howling wolf (not entirely church appropriate), so the lobby where we reside.


thumbnail3.jpg

Through much trial and error we've learned if we lay out a number of flashcards on the ground they are a good focal point for you. If you become agitated we will start asking you simple questions about the cards or switch a few out to create distraction. While this has been a blessing, even with this, our time is limited.

thumbnail5.jpg

On this day it was crazy loud with crying babies and giggling toddlers - two of your least favorite sounds.

I was just waiting for the shoe to drop and a full blow meltdown to rear its ugly self, triggering my anxiety of people staring at you like an exhibit and the guilt that I've brought you to this place of distress to come bubbling to the surface.

It can be emotionally and physically exhausting not only on you, but all of us.

But this day was different. The shoe never dropped. Predictably unpredictable.

Your flashcards were out, you stood when we stood,

thumbnail 6.jpg

sat when we sat, and when we kneeled, well, you laid down.

thumbnail 3.jpg

I'm pretty sure you saw other children much younger and smaller doing such and thought - yep I like their style! I'm positive people didn't think much of the toddlers crashing to the floor, but a giant 8 year old - surely we got a few second glances.

No meltdowns though, so this was a good day indeed!

At about the 45 minute mark, you had had enough. You started gathering your cards and putting them bag in the bag repeating ”a bye byes” louder and louder. We could visible see your body stifffing up where your stimming takes over nonstop and your legs start losing their bending ability - you're like an angry, stiff board. And that's our cue! We’re done here.

We proceeded to gather the rest of our things and head to the van. Once you were buckled in, I could see the relief as you relaxed and took a breath. It was as if you held it together for as long as you could, but you were finally ready to erupt and you knew it!

You know what my dear, I was so unbelievably proud of you this week. This was hard! While we didn't quite get to the finish line, we got pretty darn close and that counts all the same in my book!

Practice makes progress, and from the looks of it we were headed in the right direction.

thumbnail.jpg

Keep it up Ad!

Love,

Mom