Guest Post: Did Having Children With Autism Ruin My Life? By Daniel Smith

Note: Daniel is a wonderful Christian gentle parent.  This post really touched me as I have severe cerebral palsy and I always really appreciate when parents let people know that having children with disabilities is tough, but also very rewarding!

Going to tackle a tough question that comes up from time to time.

Has having children with autism ruined my life?  Is this the worst thing that could ever happen?

The answer is an emphatic no!

Aizen’s needs in particular have posed some tremendous challenges to us to understand and learn — and honestly there would have been a time I may have answered yes to this question. Age five, before we were getting support and help, was a particularly rough time because he was biting and aggressive and we didn’t know what to do. He also wasn’t talking which made things extra challenging.

But did it ruin my life?  No — I have had to grow significantly and I had a lot to learn. I have gained skills, understanding, empathy, and knowledge I would never have gained otherwise. Aizen has shown me the world in a way I would never have observed it without him. He has changed the way I perceive behaviours in other people and taught me patience and empathy in stressful situations.

Has this ruined my life?  I’d say the opposite — what I have gained would be enhancements. I am also a bereaved parent and I stress that Aizen is alive, gaining skills, observing and experiencing the world — he’s not broken, damaged, a burden or a problem. The worst thing that can happen — and I know from experience — is your child passing away and having plan their funeral.

He’s a good polite kid who has worked extremely hard for every skill he has acquired — he’s someone who should be celebrated.

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Tantrums Versus Meltdowns. Why I Choose To Call Them “Meltdowns.”

After writing and sharing this post, which made me feel vulnerable, I was very taken aback by a couple of uncompassionate responses by people I never thought would have such a reaction. They were mothers of children with Autism. They were quite upset that I had used the term “meltdown” to describe my loss of control. They had said that I had had a “tantrum” “over not getting my way.”

Needless to say, I was quite confused and bewildered by their responses. So were a number of other gentle parents. The argument these two moms tried to use was that only people with Autism are allowed to have meltdowns, and everyone else has tantrums and can control themselves.

I won’t get into how wrong it is to tell an adult who chose to share about her embarrassing episode in the hopes of reminding everyone that meltdowns happen to even mature adults that she had a “tantrum,” except to say that it is wrong.

I will explain that as an early childhood professional, I do have some knowledge of and experience with children with Autism and other sensory issues. These children can, in fact, have very intense and even violent meltdowns that can last for hours. Some of these meltdowns are triggered by sensory overload such as bright lights, too much noise, clothing that is uncomfortable, and having too many people nearby.  These meltdowns are totally uncontrollable. 

But, typical children have uncontrollable meltdowns too. A meltdown is when we lose total control over our emotions for whatever reason. Tantrums are the same thing. Only when most people hear the word “tantrum,” they picture a child trying to “manipulate” us in order to “get his/her own way.”  Even the moms complaining about my terminology said it was to “get my own way.”

In reality, when I lost control of my emotions that night, I had no thought of “getting my way.”  My thoughts were not coherent in that moment.  I was still grieving. I had just watched my husband and his sister bury their mom a month ago that night. I was dealing with my own grief. I just wanted to enjoy the rest of my time with my mom and her boyfriend before they left for home six hours away.  What I truly wanted was for my mom to live closer and for the grief I was experiencing to go away. I knew acting like a fool wouldn’t allow me to “get my way.”

That’s the thing. People witnessing a meltdown have no clue what is truly going on. They see a “bratty” child throwing a fit over “not getting what he/she wants.”  They look at the parents begrudgingly for not “controlling and spanking that brat.” They call it a “tantrum.”

What they don’t see is the child having a hard time. The child may be overtired, hungry, thirsty, getting sick, going through major transitions, being triggered by something sensory related, and/or trying to learn how to cope with a major, to him/her, disappointment. The brain goes haywire. He/She loses control. 

Yes, before a full blown meltdown, people can use coping skills. We can prevent some meltdowns by validating children’s feelings and giving them ways to express themselves as well as meeting needs.

But once anyone enters a full blown meltdown, it’s over until the brain allows them to calm down and regain control. The only appropriate response to anyone experiencing a meltdown is compassion and empathy.

The reason why I stopped using the term “tantrum” to describe children’s loss of emotional control is the negative connotation of the term. Anyone familiar with me and my work knows that I’m trying very hard to get society to see children in a positive light. To help everyone understand the development of young children. And for Christians to view and treat children as the blessings that they are. The term “meltdown” is more respectful.

I don’t care who you are, how old you are, if you have special needs or not, we all have meltdowns. Life gets hard. It will happen. Let’s not judge children or adults. Let’s assume there is always a deeper reason for the meltdown. And let’s not say that one group has “meltdowns” and the other group has “tantrums.”  Jesus tells us not to judge others. Besides, Jesus had a few meltdowns Himself in the Temple and in the Garden of Gethsame. 

May we treat all children and adults with compassion and respect!

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