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.

Perception = Reality

Growing up, I was taught that there are two sides to every story and the truth lies somewhere in the middle. I thought that was so amazing and found it often to be true. As an outsider, loner, and observer I learned that to be incredibly true. Once I was married and started to work for one of the companies I did, I heard that same thing but phrased differently. While at orientation and training they stressed that a customer’s perception is their reality. Our job was to make sure that their reality was one that resulted in satisfactory experience from us.

That holds true in life too though doesn’t it? So often we focus on our own realities that we will even argue we are right, when we are wrong. Politicians do it. Lawyers do it. Families do it. And when it comes to getting a diagnosis and accommodations for our children it lies in the perception of our reality by the specialists who claim to know.

Let’s be honest though we are trusting someone else to see the reality we see through our perceptions to help us. Sometimes our perceptions won’t line up. We will all argue about what is best or what that reality really is. Maybe it’s time we step back a second and find out what the perception of the person we are trying to help is.

We’ll use Emelie as an example. Yes, she is verbal. In order to best help her I need to separate myself from the parenting role. I can’t assume that she is fine or hurting just by looking at her. I need to pull more information in. I need to ask her questions. I need to make observations. I need to find a constant to compare it too. It’s just like field research. Yet this is my daughter.

The hardest thing I do as a parent for her is to let her tell me her perceived reality. She is telling me that her head is hurting and she is dizzy but there is nothing physically wrong with her. Does that mean she isn’t experiencing the dizziness or backaches? No. It’s her reality. Somewhere something is manifesting itself as a physical ailment or ache/pain. So, since I know she has a diagnosis of a Sensory Process Disorder that is often where I start.

I get to play Dr. House. I have to look at everything around her from the time she wakes up until that moment. What could be the trigger? In her reality, something is off and it’s my job to figure it out. Sometimes it’s sensory overload that is manifesting itself into other areas. Other times it’s her anxiety. If that isn’t it, is there a strong emotional situation going on, or illness, or plain fatigue? Sometimes, I can’t ever pinpoint the problem. Sometimes, she gets so frustrated with my questions into her reality, like I should just be able to see it. In her world, I should. In her world, it’s right there. BUT it’s her perceptions that make it so.

My job is to figure out her reality and reconcile it with the reality around us; Finding that middle ground. Helping her overcome her obstacles in her reality and knowing that she is learning how to advocate for herself by communicating what her reality is.

Life is hard for everyone. All of us have our own burdens to carry and deal with. What happens behind closed doors often isn’t common knowledge or visible. Parents of kids with special needs get judged so quickly before people know or understand what their reality is. Someone with an invisible disability is often percieved to be “faking it”. So before we dismiss someone else’s fears, viewpoint, opinion, belief, life or perceived reality… Think about how yours must look to them.

Deep Thoughts on Autism

I keep trying to blog tonight but I’m trying to find the right words. They just aren’t coming out right. I want to address the terms High Functioning and “Low” Functioning in regards to Autism. I don’t like them and find them offensive. Like saying my child is better than your child because they can xyz.

At the same time, Autism is a spectrum disorder that is like a rainbow. Some versions of it are darker and harsher than others. Each experiece is as unique as the color.

Em tends to fall often on the brighter more social side of the spectrum but there are days that it is dark and vastly internal or individualized interactions. She doesn’t or won’t talk and ignores the world around her.

I know it’s not as dark for her as it is for some families. And it’s not always in one color realm either. Illness, stress, anxiety, and excitement can move these kids from one area to another.

Yet, even as we given them coping skills and help them to navigate the colorful waters of life for them, there is no cure. They will always have Autism in the background. And that’s not all bad.

The look at the world differently than we do and it’s amazing. They live life on their terms. They love in their way, even if they don’t show it. The hear the world around them, even if they don’t acknowledge it. They feel deeply, even if they can’t express it. Life is a big world full of things we can’t see, hear or feel.

And while I don’t always LOVE Autism. I love Emelie. Autism is part of her. And I have learned to embrace Autism as fighting it only makes her feel less. And that is something she is not. LESS.

She is full of creativity. She is full of ideas. She is full of love. She is full of emotions. She is vibrant. She is very much more than some of us choose to be. Autism.

When Life Dumps Snow… Grab a Shovel

It’s Christmas. Life is chaotic. Life is already hectic. Weather is unpredictable and so is life. We try so hard to prepare for anything and everything. Yet it all can seem to go wrong in a moment. How we react and turn it around is what makes us all who we are.

In our house, every penny is budgeted before it’s even in the door. Since I’m just starting back to work we are playing catch up with some bills. I did however plan a modest budget to get our children 1 joint gift and 1 gift each to put under our tree for them to open on Christmas day. I had to wait however, until the Friday before Christmas to use some of that paycheck to get them.

I was so tired that Friday, I just wanted to go home. I picked up Matt from work and we came home. I had no desire to pick up those gifts. Saturday morning I worked. After work my intention was to run and get the gifts and come home. It was my first Saturday and I was slightly overwhelmed and decided, I’ll go with my partner aka husband to go shopping. He loves it. I hate it. So I drove home. Our van was horrible driving home. I parked it in the driveway and came inside.

Lo and behold, I had a shredded tire. Joy of joys. Can’t fix it Saturday or Sunday. Matt had to miss a day of work so we could get it fixed. And fixed wasn’t possible. Sigh. So what was a repair became a replace. What was budgeted is no longer. 2 new tires and that took all the Christmas money and then some. We were left with just enough for gas for the week to drive to and from work.

So we had an epic snowstorm (both figuratively and literally) blow into our lives this weekend. I know I am fortunate in that my kids may or may not be disappointed but they get it. They understand the meaning and spirit of Christmas. They aren’t waiting for Santa Claus as they are old enough to know. They know grandparents and relatives have things for them they will get next time they see them. Yet the mom in me hurts to know that I couldn’t give them one gift.

I had an emotional meltdown and then decided to regroup and pull it together. To grab a shovel and figure out what I can do instead of what I can’t. I may not have crafty things laying around. I may be on a time crunch. But there are things I can do. I can put some memories under the tree that they can take with them for the rest of their lives.

Does it make it hurt any less? Yes and no. It truly is a disappointment to myself. I’m sure that it’s not what they want either. Yet, life is what we make it. Everyone keeps telling me how wonderful my kids are and that they get it and they’ll be ok. Get it and understand it is a little different than being “ok” with it. I know they will put on a good face. However, they still are kids. So we’ll show them why this Christmas, is the best we’ll ever have.

So if life is dumping on you. You feel it slipping and sliding out of control. Grab a shovel. You can always shove back.

❤ Jenn

Shrekify Your Inner Fiona Ogre

I have to admit I wasn’t always a fan of Shrek. However my kids LOVED the movies (and now the musical). I loved the music but couldn’t wrap myself around the story. No matter how hard I tried. I think I was blind to the plot that the story was trying to present. Until today.

In our lives, we are always waiting. Waiting for the perfect something. The perfect man (or woman). The perfect day. The perfect time to do something. The perfect job. The perfect house. The list is neverending. Just like Fiona trapped in that tower, WAITING. Saying today was going to be the day.

I’m not a big fan of fairy tales because often it portrays the “princess” in a situation she needs to be rescued from. What if Fiona HADN’T waited and climbed out of that tower by herself. Sure she’d have had to deal with the dragon but we all have dragons in our lives. They are the obstacles that hold us back.

Some of us our dragons are our circumstances that we are pushing against. Some of us (like Emelie) it’s our health and emotional situations. Some of us it’s time. No matter what our dragon is we need to be Donkey and Shrek like and push through. Sometimes it’s finding the silver lining in the big picture. Sometimes it’s balancing a budget to the best of our ability or asking for help. Sometimes it’s finding tools and getting the help we need. Sometimes it’s figuring out that we just have to do it or we may never do it.

Once we get past those dragons we have to keep moving forward. Dwelling on what held us back or way or how we felt about it won’t change the fact that we are who we are because of the dragons. And just because we get past them doesn’t mean we won’t deal with them again.

And like Fiona, we have to figure out who our true selves are. Are we the ogre we think we are? The monster we perceive? We wear masks to protect our “true” indentity that we are scared to show. Some of us even wear several masks based on the company we keep.

What would have happened if Fiona had let Shrek see her in ogre form early on? We don’t know because the movies/musical doesn’t allow us that luxury. I’d like to think that just like the end when Shrek rushed off to tell her that he loved her and the “magic” that ensued would have happened earlier too. Sometimes I think we make things harder for ourselves all in the name of “protecting” ourselves.

So like Fiona was at the end… I think we owe it to ourselves to embrace ourselves and accept that we are who we are. Not everyone is going to love us. Most people won’t. Not everyone is going to like us. Some will even be indifferent. However those the do like us and love us are the ones that matter and the rest can join Lord Farquaad in the belly of the dragon.

Love yourselves. Embrace both your strengths and weaknesses. Life is too short to wait for that perfect moment. I’m not saying settle for things, but try to find happiness around you.