Cut the Shirt
No, not a typo. A brilliant idea that I need to file under “WHYDIDNTITHINKOFTHAT”. I have a lot of things filed there.
Harry loves all things water, and oceans and pools top the list. Ever since he was a baby I have put him in a rashguard shirt along with swim trunks for various reasons, sun protection (on yes, my vitamin d deficient child) and to keep him from being cold in the water as he had very little body fat for a long time. Feel free to point out that is ridiculous. I know.
At any rate, it seems I’ve created a problem. My mom took him to her pool, but when she reached in his bag for his swim things, she had forgotten the shirt at home. No biggie, right? HAHAHAHAHA…I am sure many of you reading along know where he headed. Meltdown city.
My Mom caught on, and gave him his t-shirt along with his swim trunks, thinking he could swim in that. Which led to-what’s worse than a meltdown? A category five meltdown? He then took off his swim trunks because obviously my Mother was insane—his t-shirt goes with his regular shorts.
He didn’t recover and wouldn’t swim that day. She had to call me to come intervene and all I could hear was him screaming in the background. I arrived and saw it with my own eyes. I had created a big problem.
I began testing over the next week, and found a very rigid behavior I hadn’t known existed. I tried to explain to him that not having a shirt while swimming was OK (laugh with me people, you know how effective this was, right?). I tried to distract him, thinking if he got in the water without it, we’d get over it. No dice. So what to do? What would you do?
I mentioned it to the executive director of Harry’s school in passing and without skipping a beat she said “cut the shirt”. Um, what? Cut the shirt, a little bit at a time. Start with the arms one day and make it a muscle shirt. Then cut the bottom of it into a belly shirt the next time. Keep cutting over time till there’s just a neck hole. Then cut that. Simply.Brilliant. Good thing we have a ton of rash guards.
I resisted ABA for a long time. At first, he was too young. Then I was scared it was too robotic. And Harry was going to be better by now and we wouldn’t need it. But we needed a way for Harry to communicate and the ABA/VBA school we interviewed seemed like the perfect fit. Individualized 1:1 therapy. It worked. In a year he’s gone from 2 signs that he used very inconsistently to 50 that he uses in combination. But it didn’t happen overnight.
And I guess that’s the thing. Harry has one particular type of straw cup he will drink from, and would just as soon not drink if it’s not from there. I can’t let him get dehydrated, so we have tons of those cups-at home, at school, and at my parent’s house. He loves apples, but won’t touch a granny smith because it’s green, not red. Sweet potato chips are a favorite, but not if they’re crinkle cut. We gloss over all of this and accommodate, always. But we’re not helping him.
So I’ve decided that beginning now I am going to start looking at things differently. I can’t just hand him a water bottle and expect him to drink from it, but I could cut the straws on his cup down, little by little until they’re not usable and we need to take off the lid to drink when he’s thirsty. Not because I’m being mean, but because what’s acceptable now won’t be at 20, and I need to begin with the end in mind.
We’ve given ourselves, and Harry, a pass on a lot of things for a long time, but he’s getting older now and we are not doing him any favors by babying him. We’re going to tackle one thing at a time and work on it, always with “cut the shirt” in mind. I hope to have good news to report next month.
I am sure there are a lot of you out there who have been where we are right now. What behaviors did you change (Your own? Your child’s?). What’s your success story?
~Goddess
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My daughter is 9 and we too have done things just to avoid a meltdown.However I realized that I was only contributing to her behaviors.I have been extremely lucky that I have not had to face eating issues she eats everything her sleep has improved with melatonin and she’s happy.My fear is puberty at 9 she’s showing signs already.She still wears pullups at night and has trouble with snaps buttons zippers etc. How to explain that is my next adventure. All of you inspire me to keep my head up and keep going. FUA!
I totally did this with my son’s pacifier when he turned three! I slowly cut a piece off of the nipple to the point he had to hold the shield and pretend to suck as there was nothing there until he realized it just wasn’t worth it anymore. When I suspected that my son had ASD at 10 months after an immediate reaction to a DTaP shot at 5 months, I decided early that I was going to try to prevent common ASD issues. I purposely drove 3 different ways to each destination before he even showed signs of adherence to routines. When he first indicated insistence that we couldn’t leave until every toy was put away, we slowly worked on leaving one item out, than another and eventually all toys. In all things, if my son could not keep up with his environment in a typical way, I figured out a way to give him the skills for him to adapt to his environment, not the other way around. When we started RDI at 4 years, it further continued our philosophy to make sure he had all skills necessary to thrive in the real world and RDI even made sure he had flexibility in the way he thought too. Now I have a fully flexible, but completely messy 10 year old boy and I would not want it any other way!
I have so been struggling with this! LoRenzo is so sweet that I do whatever I can to accomadate him.(maybe why he’s so sweet?) A good friend just told me that I have to stop babying him because if God forbid anything happen no one else could do what I do. I guess I’m scared that he will starve to death if he doesn’t get his food. He’s so skinny now. I KNOW I have to though, but the thought of undoing these seven years is terrifying!
I am reminded by your story of the realization that what we created was a rigidness within our entire family to adapt to our son’s autism. The difficulty was we were all starting to have difficulty with transition, anxiety that was not previously present, and our lives revolved around a universe of ensuring all was “just right” and what we needed to flow through life but at our son’s direction basically. But that is not what life is and we all had what I call “Aquired Autism”.
I actually felt a little flush in my neck of that itch I used to get as the anxiety would rise on an occassion just as this one. It affected us all, almost was consuming us all to the point that we were not living our lives, autism was controling our entire family. The troubled glances back and forth when his toast wasn’t browned to the way he liked it. The hairs standing up on the back of our necks when the tape he wanted at the video store was not in and he would drop to the floor. The fear present in his brother’s eyes when we had to wait in line somewhere.
So we made the decision to be brave, throw in unexpected snaffus, take a turn on a route that was different that that same routine, and anticipate and often suffer the consequences. But we also armed ourselves with some tools to do this and simplified our lives from being so scheduled to almost the minute to being more free wheeling. We had to and also felt like we were arming ourselves for war. We read up on what Dr. Ross Greene suggested in “The Explosive Child” and learned how to negotiate to empower, also began a modified RDI program, but too made a vow that we were not going to be a family ruled and lives transfixed by the “God of Autism”.
This involved time (patience), pulling over on the side of a road and waiting until a seatbelt was put back on or kicking the back of our head stopped – longest time 65 minutes, or just sitting outside a movie theater until the expectations were sunk in – longest time 25 minutes. It took energy (muscle), holding our son down when he wanted to kick, bite, headbutt, etc., and physically keeping him from hurting himself or others when the transition or that unexpected glitch (which we planned) presented itself. It took resilence (creativity) to know how to think on the spur of the moment what we could throw in the mix to assist with the guided uncertainty we threw his way. It took hope and faith (as verbs) to maintain that this was well worth all that we were doing and as our son progressed to decreased waiting times for the challenging behavior to stop or for him to process the why, we all began to feel a heavy, heavy weight lifted.
We also realized that at age four this rigidity and lack of ability to smoothly transition was not something that could restrict a child’s life in a broad sense. However at age ten would limit access to his community since throwing down in a middle of a shopping center isn’t cute anymore. A fourteen throwing items in a store or punching someone could could end up in a detainment by police. The reality of our son at age eighteen dancing with 32 young ladies at this prom wouldn’t have transpired, nor would those kisses from six of those that couldn’t resist, had even been felt. It needed to be done. The “God of Autism” was not going to keep our family under its control.
It took a while and as our son progressed and some challenges return, we revamp this practice. But the outcomes are worth the effort and we knew when we went on a nineteen day trip to Europe, traveled to eight countries with four different languages and currencies and he had it all down, no problems like we did when a train was late or trying to figure out an exchange rate. As we fretted one day when we were lost and trying to determine which bus to catch and I became anxious I heard those magical words “Chill mom. We’ll get there”.
Ahhhhh…….deep exhale…..SUCCESS!!!!
It is hard?
Hell yes!
Is it worth it?
Hell yes!
Do it and don’t “Aquire Autism” as a family. It is possible, our son had very severe autism and today he still lives with it, but he has a life….a very full one and one full of transitions and uncertainty that he continues to navigate. We do too as a family.
SUCCESS!!!!!
Sleep – we’ve instilled some ridiculous sleep patterns b/c we finally found some things that WORKED and ensured we got a FULL NIGHTS SLEEP. After too many years of sleep deprivation, you will do ANYTHING for sleep. So, like a major league baseball player who won’t wash his socks during the winning streak of the playoffs, we have been reluctant to change anything. But that doesn’t help. We are changing things little by little – I refer to it as “mommy and daddy’s ABA”. LOL
Great! No favors indeed!
I have been focusing on food lately, meat and crunchy things are what he likes. He is 2.5, so I am unsure what is texture issue and what is typical toddler. I started with only giving him another option if he didn’t throw something. He went hungry a few times and I was still going nuts. Now, he can eat what I put in front of him or he goes hungry. Mind you, I am not going wild by putting green things in front of him; those still get delivered by syringe. 🙂 But, after he picked the “cheese” off his pizza the other night, I didn’t give him anything else and he eventually ate the crust (cauliflower, pine nuts and egg) I know I baby him too and need to stop, step by step for me too!!
My son is now 9. When he was first dx at age 2, I read a Yahoo post in which the mother of a child with ASD described how her son would only eat from a blue plastic spoon, at the Burger King near their house, while standing on his head (well, no I added that one). I decided that I would not become a prisoner of my son’s rigidities. Over the years, each time that I discover my son has made a new rule (e.g, “We must always turn off the bathroom fan when leaving.”), I quicky work to make him flexible. He attends a weekly social skills group where they talk to him about having a “rock brain” vs a “super flex brain”, but what has really worked is simply telling him that we need to take turns. So if, for example, he is insisting on a specific level of the parking garage at the mall, then I tell me that we must take turns; “This time you can pick and next time I will pick.” And then I do! Even if this means a 20 minute upset. However, what I have found is that over time he becomes less and less attached to doing it his way. He starts to see that nothing bad will happen if we do not follow his rule. Because I have consistently done this for years, he now is an overall much more flexible child. There are two moms with ASD sons who we have known for years. We all recently joined the same baseball team. Both of these moms have re-arranged the world for their sons rather than making them adapt (e.g., sound cancellation headphones, non-scratchy socks, arrive on time for every event always–no matter what, go to elevators for their family weekend time). For my son, being on the baseball team was fantastic! He loved going, got into baseball, and started playing catch with his Dad at home. However, the other two boys lasted 2 games! Even putting on the uniform was a major struggle. The stress involved for these boys to actually be at the game was hard to watch. Really demonstrated to me that all of my hard work was worth it.
Love, Love, Love!!!