Nothing is more heart wrenching for me when you watch your child go from laughter, hugs and rough house playing to 2 minutes into bath time, he is standing looking scared and full of anxiety and directly says and signs, “DONE!” “DONE!” He then starts crying and several minutes later he is gasping for his breath because he is so upset.
An hour later he finally falls asleep from pure exhaustion of his meltdown (still gasping for a breath in his sleep) and you just lay there next to him until his meltdown tends to burn out and he takes a nice deep breath and you know he is finally calm and relaxed. I lay there a bit longer sometimes and pray, push all the hair away from his face and whisper I love you.
I head back down stairs and Brad and I then spend the rest of the night and truthfully throughout the night it wakes us up on what could have caused this? What happened in this very short window of time?
- Was the water too hot? No.
- Was the water too cold? No.
- Did water get in his eyes? No.
- Did he not have the right toys? No.
- Did we take a book away before getting in bath? No.
- Did we pull his shirt off to fast and it get hung on his ears? No.
- Did he get frustrated having to un-dress his self? No.
Sadness takes over me on nights like this because he can’t tell you and you struggle with the unknown. These are the days I hate autism. These times do not happen as often as I am certain can happen with some families but these days do happen to us.
You wake up the next day and start putting the pieces together on what caused this meltdown. Guess what? It’s simple. It’s called AUTISM.
Even with the best parenting, you may not always be able to head off every meltdown: the world is a stressful place for many children with autism and you can’t control every corner of it. Also, once it gets going a meltdown doesn’t need a reason to carry on, but they don’t happen for no reason in the first place. I believe Cody’s meltdowns start because of sensory overload or too many demands that are too complex to cope with. Autism makes it harder to process information: if you’re being required to do something and you don’t understand or don’t know how, being prompted too many times can lead to meltdown.
Wednesdays are our ABA team meeting days where we reset every program and goal with our 4 therapists. Cody’s therapy basically starts over every week with new programs in place that start on Thursdays. He had a 7 hour session yesterday (Thursday) and then we played right up until bath time. He could have been asked one request, where he was struggling to process on how to respond and that is all it can take to set off a meltdown. Once it starts, Cody forgets what he was even upset about but it can tend to escalate deeper and harder before he calms back down.
When Cody has a meltdown, he wants me in the room with him. He does not want to be touched and he will literally push you away if you try but he wants you close or to lay next to him. I never look at him in the face and I just lay there as if I was going to fall asleep with my eyes closed. Several minutes later he will then either grab your arm to place between his cheek and hand as if he was snuggling with a teddy bear. I believe this is his way of saying, “Sorry, I can’t control when this happens.” This is when you just love back.
Most of my blogs, we celebrate and share successes what we call CROP’S (Cody Rivers Outstanding Progress) but I think it’s important to gain a better understanding and education of all parts of autism.
I am so grateful for your words. They truly give a deeper understanding about Cody’s world with Autism.
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It’s a new day 💙
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