Dear Addie,
What is it like to have autism? I am asked that question frequently. While I can't say exactly what it's like from an autistic's persons perspective (seeing I don't have autism) I can tell you it affects the whole family and can give you my observations from that perspective.
With autism being a spectrum disorder, no autism family has the exact same perspective or experiences. Sure it can be similar, but never exactly the same.
While autism has lots of known behaviors like sleep disturbances, food sensitivities, even cases of aggression, some of the more notable characteristics are things like running, stimming, flapping, humming, scripting (yes you do all of these things) - and also screaming.
You are a screamer.
Stressed, anxious, angry, heck even excited - you scream.
This screaming behavior has been going on for so long that it can leave those of listening on a regular basis (like our family) somewhat numb to it all. One might begin to think that we have somehow been blessed with some kick-ass superpower skills of just blocking it all out, but then there are other times when (I can only speak for myself) I literally feel like I could scream louder than you because I'm about to have a nervous breakdown from all the noise. Dad has actually tried that approach on a few occasions. Spoiler - it didn't work. Had the opposite effect actually...
I guess we all have our moments. The other day in the car I glanced over at Gabe as you were having an epic screaming fit, and he had a look on his face like "Hey Ad, if you're not going to wear those noise-canceling headphones can I?” lucky for him, he was first to get dropped off to school that day.
That is the truth. Sometimes I feel like I'm teetering on a nervous breakdown. As awful of a mother as that may make me sound like, it's the truth. I often wonder how others might handle getting screamed at so much?! Would they possess grace and patience, or would they look as frazzled as I do sometimes?
Screaming effects us all.
We tend to speak loud and maybe even talk over people. Well, maybe not Daddy or I (or maybe we do?), but Clara and Gabe do for sure. If they want to be heard around here, they definitely have to take it up a notch! Perhaps not some of our greatest qualities, and we are not trying to be rude, but it is a learned behavior from the sheer fact that we are trying to talk over your volume level and screaming most days. Kinda hard to turn it off when we are outside of our immediate family seeing that's our norm.
With the constant screaming, one might think that you are a very angry kid! But that's not true.
You have different screams. Who knew such a thing?! Bravo Ad! We can tell when you're having a tantrum or a meltdown, are frustrated, happy, sad, or flat out pissed off!
We've tried a number of things to diminish the screaming from therapies, to medication, breathing exercises, oils...it can all feel every ounce of defeating at times. While we’re not giving up on interventions, I find myself putting a lot of weight in plain ole' growth and development. Although I have been saying that for years now.
As the summer quickly approaches, my anxiety heightens at the idea of going to our neighborhood pool. Adult swim time is nothing you fancy and are quick to let everyone know exactly how you feel about it. Cue the "angry" screaming! I admit I get jealous at watching the other parents seem so free and relaxed, savoring moments of their sweet children splashing about playing with their friends as they engage in light conversation with neighbors. I, on the other hand am more than likely prying some kid's pool toys out of your hands because you are trying to gather like objects which are not yours! Inevitably a tantrum will ensue and our whole scene will leave abruptly, pulling Clara and Gabe away from whatever fun pool game they were enjoying, because it's just becoming too much for you - and I.
Making a scene, things become challenging, abruptly leaving - this is normal.
People don't think much of a baby or toddler making a scene, but a rather large 8yr old - it's a different story. Cue the judgy looks.
Perhaps we’ll avoid the whole pool scene and venture out for a quick trip to the beach staying in a hotel somewhere, but even that comes with its own challenges and anxiety. We’ve had security called on us before for your screaming (for the record they were very apologetic when they realized what was going on - we weren't, in fact, harming you, which is everyone's first reaction).
Then there are the balconies that you'd surely climb or locks that don't stand a chance with your MacGyver skills. Add in the actual beach - oye. Your love of jumping in the waves combined with my laundry list of fears means vacationing isn't exactly relaxing - with your PICA deficiency you find saltwater absolutely delicious, you have yet to master swimming - even after 5 years of lessons, ummmmmmm SHARKS, jellyfish, rip currents! I even saw a video of a gator sunning himself and (for lack of a better term) frolicking in the shallow waves on the NC coast! What in the world?! No thank you!
Good or bad, even with trying our hardest for autism not to set the direction of the decisions we make, ultimately it dictates every aspect of what we do. To family outings, invitations, or school activities. Sometimes we try to give Clara and Gabe the opportunity to be kids without the worry of having to pack up and leave at the drop of a hat. During those times, we divide and conquer our weekend getaways. Daddy will take the big kids and I'll stay back with you, or vice versa. While there's sadness that we can't all be together, it seems necessary to make these trips happen for them.
I actually asked Clara and Gabe when I was writing this what they thought being an autism family was like? They both had the same response - difficult. My heart broke a bit thinking that their childhood was difficult, but before I could dwell on thinking we somehow failed their childhood, they both said "but it's adventurous!" Yes, there are hard times, but they said they loved being able to go to special sensory friendly or autism family nights at museums, movies or activity places! Being able to jump the line at the amusement parks wasn't super awful either! And they both love that while you might scream more times than not, you still play with them and think they are super silly and fun even if it's just playing ”peek a boo” or ”the little piggies going to the market.”
You truly love them, and they love you.
There are some hard truths to being an autism family - the envy of the "grass being greener" can quickly take over, and it is hard - that is a fact. But there are some super special things we all get to witness together as a family. With your milestones coming later in life, Clara and Gabe get to share in the joy of your accomplishments and not just read them in some baby book. Sometimes they even get to be the one to witness them first! How cool is that?!
So yes Addie, I long for the day when you can tell me what being autistic is like, but being an autism family, well, it is hard, but our love is larger than any hardships we will face.
It's one day at a time, and we’re in this together. While I would give anything to take away some of your challenges for YOU, I would never wish you to be any different, because you are who you were intended to be.
We all love you very much. OTOD.
Love,
Mom
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