Last fall I asked a question of autism parents: Did you make any mistakes in the early days of your child’s diagnosis?
Because of my own regrets and hearing those of others over the years, I had a hunch I would see themes develop; I was right. Though voiced through different words and experiences, the mistakes fit into 3 categories. Are you ready? Here are the top 3 mistakes every special needs parent makes:
We blame ourselves.
We blame ourselves for not seeing the signs. We blame ourselves for having the wrong genes. We blame ourselves for what we ate during pregnancy. We blame ourselves for everything. We are experts at looking inward, but we must remember that our hands did not form our children in the womb. They were created on purpose by a holy, sovereign, loving God. Psalm 139:14 affirms we are “fearfully and wonderfully made.”
For the mamas who feel they missed signs, I have a special message just for you: Guess what? I did too. Parenting in the modern age means access to more information than ever, but that’s a double-edged sword. How could we possibly learn and remember the warning signs for every possible disorder, syndrome, disease, and birth defect? We couldn’t. But, we know now. If we remain stuck in the past, we can’t be fully present today. Let’s give our children our best now, so they can be their best too.
We don’t ask for help soon enough.
Sometimes we don’t know what to ask for. Even the most educated, organized, and emotionally healthy parents will have too many responsibilities and concerns at the point of diagnosis to ask all the right questions. Plus, let’s be real. Diagnoses don’t come with a life coach. Many parents don’t realize what is available to them until it’s too late. My friend Amanda says, “The mistake I made was not completing the forms soon enough for assistance (TEFRA), etc.”
And let’s say we do ask the right questions or, miracle or miracles, we find someone to help us on our journey. One of the most frustrating aspects of special needs parenting is the time required to research, file paperwork, and wait on proper services for your child. If we do everything right, sometimes the funding isn’t available or the wait list is too long. Simply put, time is not on our side.
Other parents make the mistake of not asking for emotional support or respite care. They find themselves physically or mentally ill before realizing they need help. For me, the mistake was not only not asking for emotional support soon enough, but also not asking for practical, around-the-house support. (You can read more about that here.) I wanted to be strong enough to handle everything on my own, but I had a misguided definition of strong. Real strength is recognizing when you need help and accepting the help with gratitude and grace.
The reality is that a sick parent cannot sustain the load of special needs parenting for very long. We’ve all heard the adage, “An empty cup won’t pour.” The truth is even more grim. When our glasses are empty, we find the emergency rations and keep pouring. We move through our days on autopilot, with no time for mentally or emotionally processing our stress, grief, and trauma. Unfortunately, depending on the severity of our child’s diagnosis, functioning on autopilot for long can lead to PTSD and other mental illness for the parent, not to mention the damage we do to our children by not parenting as our best selves. When we are emotionally empty, we can’t possibly be fully present, engaged, and empathetic. We find ourselves reacting instead of responding and tuning out instead of tuning in.
We don’t listen to our own instincts.
This is probably the mistake I hear most often. In hindsight, it’s easy to see how we would trust others following a diagnosis. What do we know? Most of us haven’t been to school or received training for this. We think, surely, the experts must be right.
Keith and I walked into our first IEP meeting with open minds and fearful hearts. Horror stories and advice from the internet bounced around my brain. Bring food. Smile. Don’t be defensive. Start with the assumption they want the best for your child.
The team was kind, but as they outlined their recommendations, I bristled. “What about this?” I countered. I thought I knew my options, but I was told those weren’t options. Hadn’t I done my research? What was I missing? The meeting ended; I mustered a smile and thanked them. For what? I wasn’t sure.
Despite the fact these people didn’t know Henry at all, Keith and I told ourselves they were the experts and we were the newbies. We trusted they knew best. Unfortunately, the first IEP meeting resulted in a decision that, in hindsight, did more harm than good. From that point forward, we have always listened to our instincts first and then the people who have proven themselves over time to be trustworthy.
Listening to our instincts may mean pressing hard for testing or evaluation when we suspect our children have a need. It may mean we have to stand up for ourselves or our children in the face of those who think they know best. It may mean educating ourselves on an issue, so we can provide an alternative idea, practice, or strategy. Listening to our instincts may also mean we need to be quiet, because even though we hate what is happening, we know that it’s necessary and good. (Knowing which is which is the trickiest question of all. If you struggle with knowing how to listen to your instincts, I’m developing a resource for you! Stay tuned.)
I’d love to hear your thoughts. Would you add anything to this list? Do you have trouble with the blame game, asking for help, or listening to your instincts? Comment here or on Facebook or drop me a note at firstname.lastname@example.org.