Caregiving, Disability

December 7, 2020

Autism

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My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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Meltdowns. 

Breakdowns.

Overwhelmed.

Unable to cope. 

These are things anyone can experience. 

Let me stop right here and make sure that readers understand there is a difference between a “meltdown” and a “temper tantrum”. All kids have both, totally unrelated to any diagnosis.

But when you add in a sensory related disorder such as Autism, it can be amplified. This could be more often, or more intense, or any number of things that lead to increased distress. Add to that difficulty reading social cues and expectations, and difficulty in communicating, and you have any number of things that can cause them to feel overwhelmed. Often a meltdown is an accumulation of things that build to a breaking point.

One of the best examples of an overwhelming sensory experience that I have experienced is in the stage production of “The Curious Incident of the Dog in the Nighttime”.  The various stage elements of light and information and sound that fly around the character of Christopher really help you understand how overwhelming life can be for someone with autism. It becomes an overwhelming experience for the audience as well, and it’s really well done. 

As the saying goes “If you’ve met one person with Autism, you’ve met one person with Autism.” Autism is such a spectrum that no two are affected the same way. Of course there are many similarities and commonalities between people, but you need to know each person to know how they are affected by Autism. 

Now, back to my family and our unique needs.  Autism related meltdowns are not fun to witness. I am quite positive they are not fun to experience either. It’s not my place to describe my children’s experience. My oldest can articulate how he feels when he becomes overwhelmed. My youngest, who does not speak, cannot express this clearly in AAC – yet. 

But I know what I see. 

I see the pain in their eyes and body. 

I see the moments when they are about to spiral out of control, because they cannot cope with something any longer. I can often “see it coming”. I can see the trigger, or the escalation. I usually know the things they both need at that moment. But not always. 

I do my best to offer comfort and support in these moments. Depending on which child and what the situation is, it can look very different. 

Sometimes that’s letting them calm down on their own. (This is probably the hardest for me.)

Sometimes it’s a light hug and a gentle word. 

Sometimes it’s sensory input in the form of deep pressure hugs or back rubs or movement (rocking, etc). 

Sometimes it’s safeguarding them so they don’t injure themselves or someone else. (Sometimes this results in being harmed myself, but I’d rather take the pain for them than see them hurt more.)

Sometimes it’s a simple redirection that helps lower their sense of overwhelm. 

Sometimes it’s removing a person, place, or thing from the equation. 

How do I know which of these things will best help? That’s almost impossible to put into words. When you know your kids so well, it’s almost instinct. But when that instinct fails you, and it sometimes does, it’s also devastating. 

I find my resilience can go down when I don’t know how to help my children through these moments. When I don’t know how to help, I feel like I am letting them down. Then, like any parent whose child is in distress, I wish they didn’t have to go through it. Then I internalize that grief. 

That’s what happened this week. On top of work and our usual daily stuff, a few difficult moments for our children put me over the edge. I had my own meltdown of sorts. I was overwhelmed and unable to cope with anything else. 

I’ve dealt with my own mental health long enough to know when I’ve had enough. This week I needed a day to rest. Once my children are settled again, then I have my own meltdown. So I took some time to build up my resilience again. You cannot pour from an empty jug. Likewise I cannot help when I am out of my own personal resources. I needed time to refill.

It’s important to refill your jug regularly. It’s even better if you can refill it before it gets empty. This means prioritizing your mental health and needs. Sometimes that’s something that is easily overlooked. I’ll admit I haven’t been the priority lately, but this week I needed a stop for a day and recharge. 

Once I am recharged, and if I can keep that charge to full, I am better able to see the meltdowns coming and I can try to reduce the distress my children feel. I am better able to help them cope – and teaching them various ways to cope is a skill that will help them through life. 

Author’s Note: 

When thinking about this blog I was tempted to describe an experience in detail, but really it’s an outsider view – I can’t accurately express what my child is thinking or feeling in a moment of distress. I don’t want to post something that violates their privacy and I don’t want to post something that puts my own spin on their experience. I can write from a parent view of wanting to care for and help the best I can. I cannot write from a “this is what it’s like” perspective. 

Marilyn R.

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Hi, I'm Stacey.
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Willowjak Blog 

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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