I am putting on paper what most people won’t do because they do not want to be perceived as desperately seeking parent. I just want to share some simple yet tough truths that only parents with autism would understand. My hopes is it will give others a more of an understanding too. Nothing about autism is easy. You can embrace it; you can find coping mechanisms and you can find small ways to make daily life a little easier. But that doesn’t make autism easy.
I don’t profess to be an expert on autism, but I try to be an expert for Cody.
Autism is not a childhood diagnosis; it is a lifetime diagnosis. And it’s not a diagnosis that affects one person. It affects the entire family and beyond including our hens, our fish and Molly and Lily, our dogs.
As parents, we are an essential component of this autism phenomenon, and our parenting experience is unique. You have heard this statement before, “Autism is seeing the world with a different pair of lenses.” Our family also has to learn differently and understand how Cody’s processing is different in how typical children learn. This is why I say it effects the entire family and anyone that socializes with him. This past weekend Brad and I spent a lot of time watching tutorials of Proloquo2Go so we can become an expert on Cody’s new Communication Device on his iPad to then train those that spend time with him too.
Here are just a few realities I have observed and know that other autism parents could relate.
We have a different definition of “awareness” …To the rest of the world, Autism Awareness and Acceptance Day is acknowledged once a year in April. To us, however, every day is autism awareness day and one of the reasons I started Cody’s Facebook Page and Blog so I could educate others. We’ll always be aware of the diagnosis and always work to make others aware in hopes they will also share their knowledge. We need more awareness and I can attest to this. We raised Cameron for 12 years before Cody’s diagnosis. I did not even know what autism was other than Rain man and for sure had no idea that there was a child in half the class rooms at his middle school that had autism. 1 in 68 children have autism.
We’re very flexible (but not in a downward dog kind of way).
This has been the hardest for me. Inconsistency is the only thing that’s consistent. No matter how much we plan ahead and schedule our days, weeks and months, autism does not work on a schedule (or any schedule, for that matter.) My new phrase when we get invited somewhere is telling them, “We will be there 5 minutes or 5 hours!”
On particularly rough days, I like to remind myself that my track record for getting through bad days so far is 100%, and that’s pretty good. Unfortunately, at times, it all catches up and we experience some form of depression. Accepting our child’s limitations and the strain that it places on our family at times, can be tough. You find yourself looking for the restart button or running away. Additionally, finding the money for therapies and insurance coverage for ABA therapy can be challenging and emotionally draining and truth be told, it can be a full time job on top of your full time real job.
Hello, my name is anxiety.
Anxiety isn’t always a bad thing. In fact, the right dose of anxiety is just what we parents of kids with autism need to help us inspire and encourage our child’s independence. Telling ourselves that we won’t always be around for our child (while completely nerve-rattling), actually pushes us to invest in teaching them to care for themselves instead of enabling them to always rely on us. Brad and I get anxious about next month let alone if Cody will be self-dependent one day.
We’re as powerful as Wonder Woman. It is said that much of Wonder Women’s strength comes from her training and channeling her mental powers into physical abilities. As a Mom to a child with autism, we proudly wear our “selflessness” and “strength” cape every day. Our powers include super hearing capabilities (hearing him climb to high unsafe places) and super eyesight (leaving the snack pantry unlocked and the path of destruction that will ensue.)
Teamwork is the only option.
We understand besides us and our son that family and our friends are also an important support system in Cody’s life. Autism can be life-draining at times — but luckily we have engaged our family and friends to understand and support us. We know it’s more than a 2 person job and it takes all of us in sync and not always at the same time. We know how important it is to support each other outside of our caregiver role (think: night out with friends, one on one time with Cameron or date night) as well as in the role of caregiver by sharing child-care and household chores.
My AUsome Tribe.
The African proverb “It takes a village to raise a child” is especially true with autism. Surround yourself with people going through this same journey. Ask questions, sponge ideas and share your experiences. Your village can be a combination of medical providers, therapists, education system, church, friends and family.
We’re more than “the parent whose kid has autism.”
Autism is only a slice of who we are. We still enjoy the things we did before the diagnosis came, and we really want others to understand this. But because autism affects our life and at times is very consuming, we have to get creative when it comes to integrating all our interests. There sometimes is just not enough time in the day.
We take care of ourselves.
We don’t get to skip doctor visits because we don’t have time or don’t feel like going. Our kiddos and spouse are relying on us to be in the best health we can be in. Brad and I hold each other accountable all the time.
Never stop advocating for your child.
Our expertise of our own children far outweighs the expertise of others. They need our input, and we know that. So we tirelessly stand up for our kids in treatment, in evaluations and in life. Doctors, therapists and schools always evolve and can be replaced. We cannot.
Nothing about autism is easy. That’s because it’s different and does not come with a manual. It means we will take a different path than most. It means I will hold your hand and walk with you through whatever struggle we face or success we have.
We will take on this crazy world in a whole different way together. We will teach each other and the people around us to think and learn a different and unique way. And Cody, one day you may be reading this and I want you to remember, “I would not change you for the world, but I would change the world for you. “