My nearly 11-year-old son has an autism spectrum disorder diagnosis of PDD-NOS (pervasive developmental disorder not otherwise specified). This means basically that he’s somewhere on the autism spectrum with some things and typically developing with other things. He has gifts, he has challenges. This is how I choose to define it when asked by others what it means.
This kid has lived his 10 years with speech therapy, and IEPs, and behavior modifications, and social skills groups, and occupational therapy, and and and and… He has come so far in this decade of life.
A kid who couldn’t point to things with his index finger (or any other, for that matter) can now tell me the nuances of all the different Minecraft characters and show me the virtual world he has created within this game.
He’s incredibly smart in math. He knows the entire Beatles catalog forward and backward, complete with album listings and song run times. His phonetic reading skills are killer, but he has trouble with comprehension. He has no great friends, but no enemies either.
He is quite happy to be himself, doesn’t look to others outside our family for companionship or entertainment, but doesn’t eschew the company of others at all. His skin fits him well and he is comfortable in it.
Fifth grade has been a challenge. There’s lots of independent work to be done, Common Core has its own challenges for even kids who are considered gifted, and oh, the reading. The reading. My kid has tenuous social skills with real, live three-dimensional people; imagine him relating to a character written in a chapter book. With no pictures. And perhaps a regional dialect. Um, yeah, no.
He is rebelling in school. Not in the way where he becomes behavioral or inappropriate, but where he basically shuts down. He stops following along. It’s not a willful dissent all the time (sometimes I think it is), but mostly a coping mechanism. He gets spoken to at school. He gets spoken to at home. He loses privileges at home. His grades suffer at school. I’m doing fifth-grade work all over again. I passed that grade almost 30 years ago. I’m resigned to the fact I have to do it all again until he graduates high school. He needs the help, the redirection. I don’t do the work for him, but boy would it make my life easier if I did. “Preparing the child for the road is harder than preparing the road for the child,” I tell myself. “Stay the course. You do him no favors if you do everything for him.” But my well has run dry. I’m tired to the bones. I have two other children who need a mama. I neglect my own self-care to care for him. I’m becoming resentful. Self-hatred is at an all-time high.
I emailed the school psychologist during the winter break. I needed guidance. She knows my son well, and we are friendly enough at this point where outside of school meetings we function on a first name basis. “If you happen to check your work email during the break, and you have the inclination, would you, could you, please, call me? I need help,” I wrote. “I despise the way I act, the way I talk to this kid. He deserves better.” She called me. During her break from my kid and all the others that she nurtures and knows and ruminates on as she lies in bed at night. She also has her own. Her own kids, her own problems. When I saw her number on the caller ID, I’d have been no happier had it been Brad Pitt calling to shoot the sh*t.
I tell her my problem. I love this boy more than life itself, I would surrender my last breath to give him air. “What he needs is too much,” I say. “It’s not fair to my other two children. The highs with his successes are so high, but the lows of his struggles are so damn low. I will be doing this homework through twelfth grade and beyond,” I whined. Basically I am tired, and I do not know how not to be tired with a half a school year plus seven more (at least) school years left. I was looking ahead so far and dreading it.
This is what she said:
“Fairness does not mean equal. Fairness means that everyone gets what they need. Your other children have the wonderful quality of empathy that many adults do not possess, and it’s because of their brother. They get what they need from you and from others. No one else can be their mother. But if you give up on this boy, if you decide that your well is in fact, dry, then this boy will be lost.
“You are the advocate, you are the one to teach him the oft-neglected skill of self-advocacy so that he can help himself. You are a teacher and a cheerleader. You are the optimist. You are also human. It’s normal to be tired. It gets better. Sometimes it gets worse before it gets better, but it gets better. Cheryl, you have no choice. It’s your job.”
And with that, I opened my dresser drawer, the one with the big girl panties in it, and I put them on. And I went in search of water to fill my well.
This well cannot run dry. This is my job. It will get better. I’m grateful for the reminder of someone who did not have to call me back, did not have to cheer me on, did not have to dig into her reserves to fill my well. But she did. I will start again after the break with renewed purpose and renewed gratitude for all those who have helped us on this journey.
And for the record, even with all the challenges, I would not change one damn thing about him or my other babies. We are all exactly as we are meant to be.
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