I’ve sat at my computer pondering a response. I have not hidden my dislike for Autism Speaks for awhile and when this message came to my attention, I wanted to scream. Yet, I’m an adult so I choose to think through a response that will explain why Autism Speaks does not nor will not speak for our family.
Will I agree there is an Autism crisis in America? Or the world for that matter? Yes, however not in the same realm of possibility. The crisis is the lack of understanding. The lack of understanding can stretch from a bickering psychiatric community as to what is and is not autism, to our schools that bicker about what our child’s needs are and how to best bring out the best in our children, to therapists who cannot agree as to whether therapies should or should not be tried with our children, and to society thinking the worst when they hear that “dreaded” diagnosis. There in itself is the crisis. The lack of understanding and perpetuation of all the negative aspects of Autism. We need to share the good with the bad though and if we want to foster acceptance, we have to quit telling half the story.
My child is not missing. She is not ill because of Autism. She’s here. She is part of the group of children that often are misdiagnosed or fall the through the cracks without a diagnosis. She missed out on early interventions and therapies that may or may not have benefitted her. However, she is not gone. She is here. Thriving each day as a new day. Living each day to the fullest in her capacity. We as a family became STRONGER and CLOSER because of her diagnosis. We knew the risks. We knew the potential. We fought harder to maintain our family. We pulled together. We learned to communicate better. We learned as much about ourselves as we did Emelie. We grew as a family. We grew as individuals. We became UNlost and were found when we understood what we were dealing with and how to work together.
Yes, we need more national programs. We also need to ensure that children like Emelie who thrive with Autism aren’t forgotten. Aren’t lost in the shuffle of “darkness”. We need to get better with diagnosising girls who mask the symptoms better than boys. We need to find therapies that work. But calling out everyone under the sun with fearmongering, sounds a little like scaring society away from the best our children have to offer. We also need insurances to cover therapies they may not see the benefits in. Yet, scaring everyone under the sun, makes Autism seem contagious or evil, to which it’s not, either of those things.
Ever since becoming a mom, I’ve lost sleep. I’ve slept with one ear toward my children. I wake if their breathing changed. If they moved more or less than normal. If they coughed funny. If they ran through the house bare bottomed trying to get out that door and streak through the neighborhood showing the world what God gave them. I listened when the crept towards the fridge for that forbidden last jello or pudding. I heard them flood my upstairs bathroom, twice. Oh and that was my non autistic child. All of it. Emelie did it too though. It’s part of being a parent. And part of childhood. Yes, sometimes our little wonders of Ausomeness do it longer and more creatively. But it really is somewhat normal, if we choose to look at it that way.
I live. I live for my family. I may eat, breath, sleep and dream Autism, but I also strive to bring out the best in my children. I live to see their joy and success. I love to hear their dreams and laughter. We do things together as a family. Movie nights may involve the repeated cartoon of the week or Ferris Bueller (non autistic child’s choice) but we laugh and live. We tease, we cry, we love, and while we can’t always tell what’s going on, there is a sense of strength in our support for one another. And it comes from Emelie too.
We may live moment to moment and do plan ahead when we can. Not afraid to cancel last minute due to a shift in Em’s needs. But we enjoy life around us. Seeing the little things. Sometimes it feels like we are just drifting along. Sometimes it bothers friends and family when we cannot commit 100% without a doubt. And yes sometimes it bothers us. Yet, we see the details in life around us. This summer was impromptu water wars and trips to the boat landing to take pictures and look at the boats coming and going. Or a trip to the local little petting zoo. Whatever it was, we had smiles.
Sure. We have bad days where we feel mentally, physically and emotionally exhausted. It’s part of life. Yes, there are times it may go weeks on end. And sometimes our kiddo need more from us that we can afford to give. But I found that to be as true with my non autistic child as the one with. I have 3 years with one before Autism came into our lives. I refuse to compare them, but I will compare myself. I was just as on edge with him as I have been with her. I worry about his future as much as her. Maybe moreso because she is headstrong. She will accomplish anything that the is determined to do.
Yes, many of our families on the spectrum struggle financially. Often because one parent gives up a job or career to get a child what they need. They don’t know where to look for resources for advocates for school, lawyers to take on social security (if their child needs it), therapies that aren’t covered by insurance but needed anyway… the list goes on. Some of us even take a vow to say, whatever it takes, I may have to go bankrupt but I will give my child all the tools I can. Yet, many of us are stepping forward and helping people find those tools ~ from autism parent connections through social media. Not a site that promised to speak for us.
Not every child with autism has the luxury to know that they can grow up and handle life away from their family. The same can be said of millions of children who go to college and return home to live with their parents or sibling. Life is unpredictable for any section of society. We often look at the worst case scenario. Yes, we should plan for it. However, it’s dark. Dull. Depressing. Sadly, it will be for many on the spectrum. Unless, we start to also focus on the best case scenarios and plan for them as well. There is hope if we just look for it.
Sure our nation needs a call to action. However, it’s a call to embrace our children. Let’s learn about the bad stuff. Let’s learn about the good stuff too. Let’s learn that Autism is such a wide cast out net that there will be millions that will grow up to be the next Bill Gates and Einstiens. They may find the cures for cancer and AIDS. They may find treatments for Autism we couldn’t see due to our limited focus on the big picture (or vice versa). Let’s learn to encourage them in their passions and strengths and build up their weaknesses. Just like we do with any other child. Just because they are different and unique doesn’t mean they will not be able to contribute something.
Lilo and Stitch had a series based on one of the movies. Reminds me right now of our kiddos. The creatures were causing havoc and “bad”. Lilo saw past that. She saw that when the found the place that they fit best. They wanted to round up all these creature and put them away. Yet Lilo and Stitch stood their ground. Those creature were Ohana ~ Family. They needed to stay. Nobody gets left behind. Or forgotten. While our kiddos aren’t creatures they are our family. And when they are anxious and uncomfortable, they are not always the most pleasant. Yet find them a place they fit, can use their passions. Pure joy and happiness exudes. So it’s about finding their happy spots and strengths.
We are a family. We are strong. We live not just exist. We may be exhausted and drained and have some really bad days, but we get over it. We move on. We take each day and moment as it comes to us. We are reaching out to other families and finding we aren’t as alone as we once thought. Social media is amazing. I’m sorry there are families out there that haven’t found a way to embrace or love autism. I’m sorry there are children out there falling through one crack or another.
Let’s start by saying. This is autism: A unique experience to each family. No one family will experience the good or the bad the same. Sometimes it ketchup on everything, or jelly on pizza, or cheese with everything. Sometimes it’s about finding foods your child will eat. Or shirts without tags. Or pants that your child will wear more than 5 minutes. Autism is about shoes that don’t hurt and brushes that don’t pull the hair. Autism is what each family deals with.
There is not one concrete defintion that works except this: Autism changes. It changes who we are. It changes who the individuals are. It changes how society looks at us. It changes with perspectives of individuals. It changes from person to person.
So Suzanne Wright. You wanted a rallying cry across this country. You have one. While you may speak for some, you do not speak for me. I tire of the fearmongering. I tire of the bad all the time. I tire of the negative. Negativity will breed negativity. We wonder why society cannot accept Autism. That is why. So while you go to Washington, to participate in this whatever it is… know this. We need more POSITIVE press, not negative.
This is just my opinion, and just how I see OUR Autism.