Lies We Tell Ourselves

The last few days, I’ve been thinking about how baby steps lead to more baby steps that lead eventually to toddling and then walking and running. Sometimes though we come back to the lies we keep telling ourselves. How we try to put our grief process off and deny that we are hurting, sometimes something will happen that will make us jealous of other parents, other children’s progress or futures, and sometimes our family and friends that don’t have the same struggles we do. So today as I was writing a post and came across a thought that weighed heavily on me that I felt I needed to expand on. The “lies” we tell ourselves and the things we do. I think this is parenting in general or parenting any child with a special need.

Let’s first start with seeing the “symptoms” or “traits” and trying to pretend we don’t see them. Eventually we can’t avoid seeing that they are leading us to a place that we cannot ignore them any longer. When that happens we seek answers. All the while, we are hoping that whatever it is that we can get answers that we can “accept”. Then we get an answer or several answers. Let’s break this process down even more.

We go first into denial. We lie to ourselves about what we are seeing. We lie to ourselves about delays. We refuse to accept a diagnosis that means life changing and life altering and perhaps buy into the lie that they’ll outgrow this or it’ll pass. Sometimes we even try to convince ourselves this is just a phase. Then the reality sets in that we have to confront those lies. And this is where it gets tricky. Sometimes even as we deal with the complicated aspects of the spectrum, we continue to want to lie to ourselves. We constantly have to check ourselves. Em’s pediatrician and her nurse and the psychiatrist all know when I come in to be prepared for the questions of, “Am I crazy? Am I really seeing this? What does this mean?” As it’s my own personal little checks and balance to keep these “lies” in line. I breathe easier knowing I’m not the only one.

Then we go into anger. We lie to ourselves about the cause, as most of us have come to terms that there is no true proven cause of autism. We lie to ourselves that we are ok with this when deep down we are so angry at the world that we don’t know how to respond. We get angry at the autism and we lie that we cannot learn to embrace it. We lie to ourselves that we can separate the autism from our child and then get angry when that lie comes impossible to do.

Sometime we hit depression and bargaining points. We lie to ourselves we’ll be ok if our child can just this or that. We lie to ourselves that we are ok when the stress of it all hits us. We lie to everyone around us that we’re ok and don’t need help, we can do it all on our own. When the reality is, we aren’t supermoms or superdads. We do what we have to do. Sometimes the depression hits us when we realize we cannot do it on our own. We need help. Sometimes we have chased away without meaning to the people who were willing to help and then have to approach them and say we need them. And that’s when we find out who our true friends are and what family loved us unconditionally.

Most families at some point hit the phase of acceptance. We learn that we cannot separate our child and autism. That autism isn’t a curse; it’s sometimes a blessing in disguise. We accept life will be difficult and a challenge but those that matter are still around. Even though most of us still lie to ourselves that we are ok without those who couldn’t cope with our craziness coming to terms with this diagnosis. We learn to accept our children may or may not live up to our dreams for them which if in truth is another lie we tell ourselves about all our children. We learn to love the people around us.

Back to the lie we tell ourselves regarding our children’s abilities. At some point we may be confronted with choices that we don’t really want to make or envisioned ourselves making. Creating situations that may lead us to relive some of the emotions we’ve already worked through. Sometimes creating emotions we thought we’d dealt with and realizing we only delayed.

If it sounds familiar, it is. You see it follows the pattern of the five stages of grief. We have to learn to change how we look on our children and accept them. We have to learn to let them teach us how autism is ok and even beautiful. I have worked with some children who fall on the severely autistic side of the spectrum and let me tell you, these kids live with their whole heart. They love with their whole heart. They feel with their whole heart. We just don’t understand their world.

What we may envision for our children, may not be their reality. The reality for them is a constant and ever changing frontier. When it seems dark and bleak, there is hope there somewhere. It’s realizing they are more than the sum of their diagnosis. They are greater than whatever conditions are placed upon them. And while our dreams and our realities will be challenged, there is always hope for happiness.

To the parents no matter where they are in this process, I only have one message for you: Don’t ever let anyone tell you it’s not ok to feel the way you do. They are YOUR feelings. You have to come to terms with this in your way, in your time, someday. And I truly think you will.

To everyone else: Keep learning. Keep encouraging. Even if you get pushed away, understand that we may just need some space. Let us know that you’ll be there when we need you and then be there when we need you.


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