On “Doin’ Time” and Learning to Fly (Part I of the “Padded Room” Situation)

On “Doin’ Time” and Learning to Fly (Part 1 of the “Padded Room Situation)

Note: This is one of those posts that I hesitate to write in a public space, simply because I want, on one hand, — more than anything — to bring acceptance and awareness to the autistic community. I want people to understand both sides: the challenges of being an autistic person in a mostly neurotypical world, and the challenges of raising an autistic person in a neurotypical world. On the other hand, I am very mindful and cautious when I write here, because I absolutely MUST maintain my son’s dignity first. It’s a delicate balance and I’m always worried I’ll cross the line, and inadvertently harm him, so with that in mind, I will keep today’s details brief, short, and to the point.

Today has SUCKED.

It started off with Cassius being very tired. The social skills camp and therapies he attends take up most of the day Monday through Friday. Now, I know that is controversial: but please understand that, generally speaking, he enjoys going. He has good relationships with the people he works with, enjoys summer camp, and wants to be there. He is, for the most part, learning how to cope with day-to-day challenges, and enjoying doing so.

Unfortunately, one of Cassius’s biggest challenges involves handling regular, day-to-day changes in routine. He’s been, largely, doing much better since we brought on the amazing autism team at Keystone Behavioral Pediatrics, but growth always comes with growing pains, and sometimes — well, sometimes you just gotta have a meltdown. And oftentimes schedules and plans change.

This happened today. For Cassius, it’s never a single event or situation that causes him to spiral out of control [this was a concept that I did not understand until recently]. His ABA therapist, Matt, compares it to a “bucket.” Life’s stressors are like pouring water into that bucket. It fills, slowly, day after day, as he is constantly being overstimulated by smells, sounds, textures, colors, lights, and sensations that most of us are able to block out. Add to that, the stresses that accompany constantly being confused and unable to understand other people’s social behaviors, as well as the social anxiety that comes with the knowledge that others understand social cues that you do not, and you’ve got a time-bomb in the making.

Throw in a little anxiety, and the timer on the time-bomb rapidly accelerates. And then, sometimes, sometimes Cassius just falls apart.

Today this happened, for the first time, at summer camp. Being this is a social skills camp designed specifically for kids like C [and run by the same team that handles all his therapies anyway], they were prepared for this. They even expected it.

They were far more prepared than I was.

There are procedures in place for when children begin to fall apart and exhibit signs of self-harm. They are nothing you wouldn’t expect, nothing crazy. It starts with basically a time-out chair and a 3-minute-timer, to allow the kiddo to calm down. If that doesn’t work, they have a padded room they use under specific, trained supervision. This often allows the kiddo to cool down and decompress in an environment where he or she cannot hurt himself or anyone around him.

Not to be too highly specific, but, lets just say C spent a good amount of today in that room. He didn’t know it, but I was right there with him, feet away from him, with my heart breaking into a million pieces. My hands on the cold glass pane, wishing he could see me, but knowing that he couldn’t and shouldn’t. I was 4 feet away from him, but there were miles between us, as his universe spiraled out of control, fueled by anxiety, frustration, and over-stimulation.

I wanted so badly to rescue him. I wanted to make it all better: but I knew if I did what he wanted [he wanted me to take him home so he didn’t have to do an activity that — under any other circumstances, he would have loved, he was just upset because it wasn’t scheduled ahead of time], that would, absolutely reinforce his poor choices. And next time his summer camp group had a change of schedule that Cassius didn’t want to participate in — yup, you got it, he would inevitably repeat this behavior, because, if it worked last time, it would work again.

So, I watched. I watched my baby wear himself out, then eventually lay down, and fall asleep in a padded room, my fingerprints smudging the glass, forever announcing to the world that I was there: worse, announcing forever to the world that he was in there. I tried to joke with the staff, but on the inside I was dying. My baby is in there. My baby is in there. That’s my baby in there!!!

This storm has been brewing for a couple of days, so maybe it’s a good thing that it hit at a place where I had the supports and staff — and the room — where he could be kept safe. Knowing this doesn’t make it any easier. Knowing this doesn’t make me feel any better. As I write these words, my heart aches.

As I watched him sleeping, tears still wet on his swollen cheeks from all the crying he had done, I felt alone. Brutus was working on the ship, and I didn’t want to completely freak him out, so I just texted him and was waiting for his return call (he doesn’t get much of a signal when he’s on the ship). The autism team that I was working with were kind, supportive, and helpful. This is what they do. He’ll be okay. This is nothing new to them.

But it was new to me.

And my baby was in a padded room.

So I reached out the only people that I knew would really understand, and that is other moms that have been in similar, if not the same, situation. As the universe would have it, Jennifer Dirks was working on a blog post where she talked about teaching the challenges of teaching her daughter how to fly. She wrote this to me:

The best way to look at this is this way. We need to give him opportunities to fly. He may soar. He may flutter up and fall down. He may flutter about and soar. Or he just may fall. We’ll never know if we don’t give him those opportunities. And the joyous part about falling is teaching them to pick themselves up and try again. Like a bird, eventually he may learn how to fly where he used to fall. The hardest part about it all, letting him fall and not rescuing him as he falls. Waiting to see how he handles the next step. If we rescue him every time it gets hard, he will never learn to soar because it’ll be easier to not try at all.

Communication. Empowerment. Choices. Networking. Success. Failures. Balance. It’s all part of life. And we all know, life is not easy. So to prepare them, we find what it takes and push them a little bit harder and further out every time. Catching them when we can and embracing them every step of the way.

And with that, and a few deep breaths, I knew that everything is going to be okay.

Today he may have fallen down. Today he may have had to do some “hard time” in a padded room. But I know my kid. My kid is the strongest, smartest, most stubborn little person I have EVER met. He’s the kid that, after being bullied by one child for 10 months, ended up saving that kid from being jumped by a gang. My kid is the one that took care of me while I was on hospice. My kid is the one that held our family together when I was [literally] dying and my husband was burning the candle at both ends.

My kid is freaking awesome.

He is stronger than you could ever imagine. He is kinder than you could ever imagine. He is bolder than anyone you’ve ever met. He is brave — even when plagued by debilitating, impossible, overwhelming anxiety.

And he’s got this.

He is going to be okay. He is going to learn how to fly. And, while it hurts like hell to watch him fall, I am so proud of him. And I know when I go to pick him up in 20 minutes or so, he will amaze me with his ability to pick himself off, dust himself off, and hop back on that horse.

Thank you, Jennifer, for grounding me. Thank you Mandi, another autism KBP mom, for talking me through it this morning. Thank you Matt, Jennifer, Mellisa, Mike, Derek, Dr. J., Dr. F., and all the others at Keystone Behavioral Pediatrics, for guiding us.

And mostly, thank you, Cassius, for making me a better person, just by being who you are.

I love you.

[A meltdown often leads to a feeling of failure, especially when you are trying to avoid one.] This is a picture my son and his ABA therapist drew of a recent, really horrible meltdown/tantrum...

[A meltdown often leads to a feeling of failure, especially when you are trying to avoid one.] This is a picture my son and his ABA therapist once drew of what goes on inside his body when he is overcome with anxiety, resulting in a meltdown. Really makes you think…..

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10 responses to “On “Doin’ Time” and Learning to Fly (Part I of the “Padded Room” Situation)

    • Thank you so very much for your kind words. It was a tough day! But tomorrow— tommorrow is a brand new start ❤

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  1. HUGS! I can’t imagine watching that, I would have had to have left the room 😦 As parents we do what we have to in order to help our children and it sounds like you believe this truly will help, you know him best and you will make the right decisions for him as a loving mom 🙂

    If you haven’t joined this new facebook group please do 🙂 Its “raising a child on the not so pretty side of autism!”
    https://www.facebook.com/groups/1443434815941240/

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  2. Reblogged this on Think the Infinite and commented:
    A very moving post by mypuzzlingpiece.com. Words of advice aplenty that I took to heart. Watching your baby fall is so very hard. Her strength is inspiring.

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  3. So sorry you had to watch your baby fall today. Unfortunately, it happens, but hopefully next time, he won’t fall as hard, as far, or for as long.

    Social skills camp? Padded room? Sounds awesome to me! My 17 year old daughter could really use resources like that! Wish we had something like it.

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    • I so deeply wish that everyone kiddo had access to the services that we do. My husband re-enlisted in the Navy for 6 years (which when he is done, will be a full twenty years!), a job that he (honestly) hates, because the insurance is the only insurance in this region that covers all the services that C needs. Right now he is doing PT/OT/Speech, Social Skills Group, Social Skills summer camp, ABA (Applied Behavior Analysis) with a BCBA for several hours a week, and ABA with tutors (BCaBa’s), as well as CPT (A trauma-based mental health therapy) and tutoring. It all adds up to be about 40 hours a week — a full time job, nearly. Out of pocket, this would all add up to be well over $100,000/year (if you include the tuition to the school he is going to, also an autism specific school, in the fall). The average family spends about $60,000/year on services for their autistic kiddos because the insurance companies REFUSE to pay for them (claiming it’s developmental, not mental health, therefore not requiring them to pay for them). Some states are better than others, but Florida is AWFUL. Not only will the insurance companies not pay for anything (or if they do, they don’t cover much!), but the ESE services provided through the school system is completely lacking in funding, qualified personel and staff. For example, my child’s private neuropsych eval indicated he required like around 40 hours of therapy a week, BUT the schools’ eval (which is the exact same scales, just not quite as thorough, but they CLAIM it’s identical) stated he needed NO PT/OT/SPEECH, No Social SKills assistance, NO assistive technology, and I think his public school IEP gives him 15 MINUTES of ABA-instruction every OTHER month. The nature of ABA is that it is time-consuming: 15 minutes every other month, throughout a ten month school year, works out to be a total of 1 hour 15 minutes of ABA therapy a YEAR. That’s completely pointless!!! Anyway, the services are largely lacking. There is no way, if my hubby wasn’t in the military, that we would be able to do this. So, Brutus is our hero, in SOOOOOO many ways.

      Different states have different services accessible. Hoping you are in a place where you could get access to more services than we can, here in Florida.

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    • **Hugs!** Are ya’ll in an “extinction burst mode, too?” Tomorrow I will follow up with a post that will make you smile. I promise. I’ll tag ya in it! ❤

      Sending love from this circus to yours! ❤

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