My kiddo last week was diagnosed with ASD and ADHD. And more than anything else, I want to read a good book. Life is bumpy, which is my shorthand for… stuff getting real. I thought when a special need presented itself, parents were presented with a magic button to push that would summon the special needs fairy godmothers. I thought there would be a road map for how to find the help, resources, and therapies my kiddo and family needs. I thought there would be some expert somewhere who could navigate this brave new world for me. Nope.
There are some epic learning curves occurring in our house. A new metaphorical marathon has started, and I suppose that there are three things that I want to remember for the miles ahead. Maybe four.
- Forgive people. Forgive yourself. Am I perfect? Nope. Am I saddled with responsibilities I feel ill prepared for? Eeyup. Have I gotten it oh so wrong before? All the live-long day. Is there more to my story, my family’s story, my kiddo’s story than most people know/realize/care? Sure is. Am I trying my best? Always. But… My best wasn’t good enough in the past, and oh boy am I scared that it isn’t going to cover even the bare essentials now. Heavy sigh. It goes both ways. I get things wrong. People have gotten things wrong about me and my kiddos. I’ll liberally spread the forgiveness around as thick and deep as manure.
- I am not an expert. I’m not going to be an expert on all things ASD and ADHD. I’m not going to be the expert on my son. He’s the expert on him. I’m his mama. I’m going to keep climbing up the learning curve, but this is me right now rejecting the idea that I have to eclipse him or the therapists, doctors, teachers, specialists, and everyone else I’m trying to marshal as a resource. This is bigger than me. Don’t hold up my mother’s intuition or love as the be-all-end-all. Don’t put it all on my shoulders. Maybe the sentiment is intended to be a vote of support of validating, but at the moment it is overwhelming and unhelpful.
- Five minutes a day may be all I can manage. Do you know what ABA therapy is? How about the distinction between OT and ABA? Did you know if your insurance covers hippotherapy? Hippotherapy… that’s where we tie hippo stuffies to our head and dance around the room like we are water-horses, correct? I’m trying to be proactive everyday, even if it is only for five minutes. Because this is a lot. And I haven’t done enough research to know if the towel above is right.
- Read a good book. Last night we finished reading aloud Harry Potter and the Sorcerer’s Stone. That book held up last week when life changed. That book held up for me and for my daughter, “I like Harry Potter!” It held up for my son, who said before I even put the book down, “We HAVE to read the second one!” I finished reading Neurotribes last Saturday, and can confidently speak to the concerns of over-diagnosis (ASD was narrowly defined in the past due impart to Dr. Kanner’s insistence that he discovered an extremely rare and exclusively pediatric condition), vaccines (I myself has conducted studies that peers has failed to replicate about whats causes autism. It’s only a matters of time before I twists arms and begs favors to get it in a fancy publication–NOTE: I am using irony (rather badly) to illustrate a point.), and ASD being ever-present in human history (Henry Cavendish, any one?).
How can you help?
Tell me about a good book. Read a good book. Do some ASD/ADHD research and tell me about it. Learn more about neurodiveristy: ASD, ADHD, SPD, dyslexia, dyscalculia, synesthesia are just a few of the ways brains can be differently wired. Shovel that forgiveness manure around. My aunt is fond of the quote, “Be kind. For everyone you meet is fighting a battle you know nothing about.” We were fighting before the diagnosis came as best we could. We’re fighting the same battle with a little more knowledge and a host of others now. And if you are so inclined, get your kiddos screened for neurodiveristy. Living with a cool, unique brain in a world that maintains a one-size fits all model, can lead to anxiety, depression, addictions, and learning disorders if you have no answers for why the struggle is so real. So says our psychologist. Feel free to disagree. I honor that every path is unique, individual, and miraculous.