Celebrate the victories
As you progress through your Autism parenting journey, you will very quickly learn how easy it is to be overrun by the negative. The amount of heartache, pain, frustration, exhaustion (both physical and emotional), stress, fear and guilt you feel will weigh heavy at times. The negative can very often overshadow the positives.
Understand and accept that your life is likely to be different from what you had originally planned and adjust your expectations accordingly.
A child with Autism can struggle with things that come very easily to most kids.
While it might be true that your child with Autism will never score the winning touchdown or sink that sweet three-point shot at the buzzer to win the game, your child will amaze you in other ways. Find joy in the little things most people ignore.
It’s important to celebrate the victories, no matter how big or small they may seem. In my family, we have found great joy in the little victories. We routinely celebrate things like wearing shoes and sock, trying a new food, self-regulating, adapting to a change in routine, and overcoming any other obstacles in their lives. There are victories in our house and they help me maintain perspective.
I figured out very early on that I needed to let go of what I thought my parenting life was going to be and embrace my Autism parenting life for what it is.
The final and most important thing any Autism parent can do may sound both counterintuitive and even selfish, but hear me out.
Being an Autism parent is the most difficult and challenging thing I’ve ever done. That isn’t to say there aren’t amazing experiences along the way because there are plenty of them.
The amount of stress a typical Autism parent will experience on a daily basis, however, is indescribable. Over time, that stress can take a toll on your physical and emotional health. Our bodies and minds aren’t meant to endure this level of stress and trying to power through it is simply unsustainable. The end result will often be Caregiver Burnout.
My friends at The Cleveland Clinic describe Caregiver Burnout to be a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude — from positive and caring to negative and unconcerned. Burnout can occur when caregivers don’t get the help they need, or if they try to do more than they are able — either physically or financially. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones. Caregivers who are “burned out” may experience fatigue, stress, anxiety, and depression.
Learn more about Caregiver Burnout and how to avoid it by reading Autism Parents: You Must Be Selfish.
There’s a common, well-intentioned but very misguided approach to being an Autism parent and that is the child with Autism always comes first.
I tell parents all the time that there is an order for things and it may go against the grain because it seems selfish but it’s so important to do it anyway.
You must first take care of yourself as an individual. Then you take care of your marriage or parenting partnership (assuming you’re not a single parent) and finally you take care of the kids.
Many people feel this is wrong because the kids must always come first. That’s well-intentioned but horribly misguided because if as parents we don’t take care of ourselves, we won’t be able to take care of our kids. This is why when the oxygen masks drop on an airplane, you’re told to put yours on first and then help those next to you. It’s why as a paramedic, the safety of myself and my partner came before anyone else. If something happened to one of us, we wouldn’t be any good the people who needed us.
The point is, you have to make yourself a priority because if you go down, you’re no good to anyone. Focus on your marriage or parenting partnership next because Autism parenting is hard. If your marriage or partnership is on solid ground, you will have a built-in support system and you’re in a much better place to care for your child with Autism.
It’s so easy to lose sight of this but if you do, you’ll end up running yourself into the ground.
There are few things a human being can do that’s more challenging or stressful than being an Autism parent. I say that as someone who used to run into burning houses and pull people out of car wrecks for a living.
Sometimes you have to be selfish before you can be selfless.