When I was in sixth grade and having serious trouble with bullies at school, my mom said she was going over to my school to talk to the principal, the school counselor, and my teachers.
I was mortified. She was going to talk to the adults at my school? And the principal, no less? She would approach a man with scarcely less power than the President of the United States about the problems of a mere child.
I expressed my anxiety, probably with shouting and tears. To say I was a child who feared authority is understating the case by miles. “Mom,” I howled, “you can’t! I’ll just get in trouble or something! They’re teachers! And the principal!” I was weak with fear.
She looked at me with a little frown on her face and said, “Yeah, but I’m the mom.”
I don’t recall that anything my mom did that day at my school helped my bullying situation at all (It was a bad situation, and the principal was not an effective one.), but when she said, “I’m the mom,” my mother gave me one of the best and most enduring gifts as the mom of a child with disabilities.
Most of us who have kids with special needs get used to the set-up very early: we walk into a room for an evaluation, a treatment planning meeting, or any of the dozens of appointments we attend in a given year, and we are there to discuss the needs of our children, the people we adore and desire to protect, the small humans we love beyond all reason.
Also in the room are experts: doctors, teachers, and therapists of every stripe. These people attend dozens of such meetings each week. Some may be compassionate, committed and caring. Some are only going through the motions. Some may seem actively hostile, but whatever their attitudes, they are doing their jobs. They have responsibilities to meet, reports to fill out, and budgets to manage. They are experts, accustomed to taking the lead and making decisions.
Which means my beloved, singular, extraordinary child is but one responsibility in a long list of responsibilities, and however passionately any of those people may do their jobs, it is still a job. My child is one of hundreds, maybe thousands, that many of these professionals will see across the course of their careers, and where they are accustomed to taking the lead, I am accustomed to following the directions of doctors, teachers, and administrators. There are few experiences in my life that have required me to challenge authority (though I’ve done it for fun, when the stakes were much lower than the health and welfare of my child).
None of this is to say that there aren’t a great many professionals who work with kids (both with and without disabilities). There are many people who care deeply and advocate fiercely as their paid work. My family has been fortunate to work with many such people, but none of those people is our child’s parent. None of them is connected to him as his family.
What I had to work hard on in the very beginning, though, were my authority issues. While I was never, as an adult, as terrified of people I perceived to be in authority over me as I was as a middle school student, I had never really outgrown that anxiety. When my eldest three children (all of whom developed in a typical manner) were in elementary school, I was eager to please their teachers. I wanted to be one of the “good moms,” and I viewed parent/teacher conferences as an evaluation of me as a parent as much as a report on how my children were faring at school.
I felt the same way about doctors, my parents, my in-laws, and the little old lady in the grocery store who said my son should be wearing a hat.
This is not to say I was weak. There was the aforementioned rebellious streak. When there were the inevitable small problems at school, I went to my kids’ teachers and discussed them like an adult. I was a firm disciplinarian of my children and never tolerated other people treating them poorly if I could help it.
Then I had my youngest son, Carter, now 12-years-old and who has multiple disabilities, and I had to learn to stop being a mom and start being The Mom. I had to learn to square my shoulders, straighten my spine, put all my feelings away (to be taken out later and howled into my bed pillows), and interact with all my son’s doctors, therapists, teachers, and other assorted experts as The Mom.
The thing about all those medical and educational experts is, they have no authority over me, the parent. All those experts have knowledge and expertise that I must access to help my son have the best possible life, but they are expert consultants, not bosses. He needs a good, highly specialized education and we need a school to provide that. He needs specialized medical care and we need doctors and therapists to deliver that care.
But I am the ultimate authority on my son’s life and needs. I’m the only one with 100% of the information (not because I ever hide information, but it’s impossible to share everything) and I am one of only two people (the other being my husband) who are wholly, completely, and forever devoted to his well-being.
Except now something is shifting. Carter is twelve and he doesn’t have the luxury of waiting until his adulthood to learn to be strong in the face of perceived authority the way I did. He has extraordinary needs, and he is old enough now to recognize those needs and speak up for himself when necessary.
Of course, very often he needs support when he needs to discuss a problem with someone, but as often as possible now, I stand next to Carter, offering him the strength and confidence of my presence, and let him take the lead. Recently, he’s been having some struggles with a new teacher at his school, and he got in the car at the end of the day in tears several times.
Carter and I spent some time strategizing. He decided he didn’t want to talk to the teacher, that he was afraid about that, but he did feel comfortable talking to his principal if I would come along.
I didn’t say a word in that meeting except courteous greetings and farewells. Carter took charge, starting with a few positive words about the new teacher, and then moving onto the problems he was having with her, offering concrete examples of things she said or did and how he felt after.
I was amazed. Walking him back to his class, I asked, “Carter, you did that so well. You were really strong without ever being mean! That’s amazing.”
He shrugged. “Nobody knows exactly how I feel if I don’t tell them. You always tell me that.”
For years, I carried the torch of advocacy myself, and while I expect Carter will need help carrying it for many years, and maybe forever, we’re carrying it together now. I taught him my little trick of squaring my shoulders and standing very straight when he’s going to have a difficult conversation. He says it doesn’t work that way for him, that what makes him feel confident is knowing that if he can’t get anyone to take him seriously, he’ll ask for my help. “They have to listen to you because you’re The Mom.”
About the Author
Adrienne Jones lives in Albuquerque with her husband and children, and in the hours just before dawn, you can find her at her desk in the little office next to the kitchen, writing stories. She blogs at No Points for Style.
Find links to almost everything she does on the internet at about.me/AdrienneJones.