Parenting lessons: 24 years and counting
24 Years and counting!
Terence turns 24 this week and I am elated. There is something about a birthday that brings reflection and anticipation for what is to come.
Twenty-four years ago, I screamed Terence into the world. He was nearing 9 pounds and my labor lasted only four hours, which meant no anesthetic when I needed it most.
I knew early on that Terence was not meeting the same growth markers as his older sister. When I would discuss this with his pediatrician, I was ignored. “You mothers worry too much. He is a boy and they always mature later than girls.”
Thus he would not be diagnosed with autism until age 4, which is when he began to speak.
Since then the journey has taught me many lessons and Terence continues to drop his own gems. Sometimes its like God is speaking through Terence! And I’ve learned over the years to pay attention.
Here are a few of the lessons I’ve learned over this time of parenting a child and now an adult on the autism spectrum:
The first lesson is to Trust Your Gut
I knew the delays Terence exhibited meant something, but I chose to believe the doctors instead of what my mind was shouting. Eventually my concerns were justified and given a name: Pervasive Developmental Disorder (PDD_NOS) now called autism spectrum disorder. Years later, when I noticed two lumps on my throat and my primary doctor waved it off, I went further. I knew those lumps didn’t belong there. While I never suspected cancer, my persistence with the next doctor got me a CT scan and then the phone calls for more testing and finally a diagnosis of Non-Hodgkins lymphoma. I’ve been in remission for 10 years now, Thank God! The lesson though remains: following my instincts continues to bring significant benefits.
Second, anger, frustration, tantrums are all attempts at communication
When Terence was younger he would wander off in stores, have screaming fits and lay spread-eagled on the floor with tantrums if he didn’t get what he wanted. No amount of coaxing would end these tirades. I learned to ignore the horrified looks of other adults, pick up my son and toss him over my shoulder and walk out of the store.
In other instances, his cries and whines were signs that he was not going to sit quietly in the shopping cart as I selected groceries. I began to pay attention and I took action. If I saw he was on the edge, I bypassed the store and headed home. Whatever I needed was not as important as peace of mind.
Third, protect and nurture sibling(s)
My daughter Destiny has been and is a rock where her brother is concerned. The love between them is so fierce, I love it! However, the journey for my daughter has not been smooth. Once Terence arrived on the scene, her needs were often secondary. As things evolved, I learned to shield her as much as possible. If Terence was having a tantrum in public, I’d hand her the car keys and allow her to exit the scene. But there were signs that she was having trouble in school and I missed them. She did well enough to get by until she got into the higher grades and having missed the clues, getting help was late, stressful, and often hurried for testing. Also, money-wise I invested in Terence’s needs while her interest in sports, coaching, and other things were sacrificed. If I’d known that sports would get you into college almost easier than grades, I would have invested in her interests!
Still allocating time, attention, and money to yourself AND the other relationships in the family is a juggle that must be given the same weight as care for your loved one with autism.
Fourth, intellect comes in all forms
Every human has talents and skills. It doesn’t matter what the IQ. There is an innate ability in everyone to perform a task or skill or even to bring joy. With Terence, I am continually astonished to discover new information he has tucked away in that intricate brain of his. His favorite subjects are international countries, any type of animal/insect/reptile, trains and construction equipment and, of course, dinosaurs. Terence will pull out these facts and share them when requested or drop gems in the middle of a conversation (naturally, he listens more than participates, but when he speaks—wow!). This lets me know that in spite of his autism diagnosis, he has much to offer the world and to others around us. I no longer underestimate him, because he has a wide range of abilities and at the right time they surface.
Fifth, build a community!
To flourish on this autism journey requires a group effort. Friends, advocates, teachers, coaches, professionals and girlfriends are all needed. Our life changed once I joined a mothers group in Douglasville, Georgia, when Terence was in elementary school. Those two ladies showed me we were not alone and introduced me to our future behavioral and educational specialist. From there, family, teachers, speech therapists and others would all come together to help Terence and our family on this journey.
And like any structure, your community may need to be renovated and should change, expand and grow as want and needs demand. Thus, we are building a new community for Terence as an adult. Again, Ask for help. Build a team. Prosper!