If parents do their job right, and don’t seek perfection through childrearing, their children can become who they were meant to be at a young age. Otherwise they may spend a lifetime figuring out what other people want of them.
Your book is subtitled “An unusual parenting journey.” What is unusual about your parenting journey?
I became not just Thorin’s mother but a mother, period, when I was 49 years old and my husband, Ward, was 35. We adopted a child with a disability through our state’s foster care system. I became a homeschooler. I also said I would never do any of those things: adopt from foster care, adopt a child with a disability, homeschool, or even date my husband, given his age. Maybe it’s unusual to let life happen rather than thinking you have all the answers.
What prompted you to write this book?
I started a blog in 2010 about my family. I didn’t connect to much in the blogosphere about raising a child with Down syndrome (DS). The websites were either medically based or written by parents who wrote almost exclusively from their experience rather than their child’s. I was interested in understanding the child’s perspective. I couldn’t find that, so I decided to write about it myself. I wrote about our journey as I experienced it: funny, feisty, optimistically, and filled with memorable characters. Only about 30 percent of what I write is specifically about DS. The growing connection with readers over the years gave me confidence to write a book. My story is a universal experience in spite of its unusualness.
You adopted a son with Down syndrome. For any particular reason?
It just felt right, which on the face of it seems strange. We made it clear to DHHS that the biggest disability we could handle was a child who was left-handed or maybe color-blind. Then our foster-care worker left a voicemail about a 2-year-old boy who had DS. Within minutes of listening to that message together, Ward and I experienced a shared sense of calm. A profound sense actually. It sounds mystical but it was a very natural feeling that we came to rely on when things got confusing. Thorin felt like our son.
How do people misunderstand those with Down syndrome?
We have relegated people with Down syndrome to the role of the perceptual child who is capable of a singular emotion—happiness. I cannot count how many times we have heard that expression, “They are always so happy.” Not true. My son is a complex individual. He has dreams, hopes and goals. It just takes Thorin longer to realize his accomplishments. I’m a late bloomer so I get taking longer.
And how do people mistreat them?
Most aggressively, people with DS and disabilities in general are more apt to be victims of sexual and physical exploitation. They are more apt to be recipients of bullying and victims of restraint and seclusion in schools. They are more apt to live in poverty as adults. It’s not a pretty picture. We see disability as abnormal. The further someone’s identity is from the norm, the more we objectify that individual to the point that we dehumanize them.
We don’t see neurodiversity as any other diversity. We are not all the same neurologically. What if that was simply a difference?
When you learned of the possibility of adopting a child with Down syndrome, you said, ”everyone has something.” That moved me to tears. Tell me how you believe it is true.
Thorin’s foster-care worker—whom I adore and to whom I am forever grateful—shared something with me that was powerful. She said, “It’s better if you’ve had some difficulty in life. Something you’ve had to overcome. It will make you accept your foster child more as they are.” I absolutely believe that. I was sexually abused as a child, and later I was in an emotionally and physically abusive relationship. I know it takes time to overcome life events. Nothing happens overnight. I also saw this in clients I worked with as a social worker. I came quite naturally to understand that we all have something that makes us vulnerable in the world. It can be a point of understanding rather than a weakness. Certainly children in foster care have had something happen—more likely several things, including the destruction of their family.
Life is messy. Parenting is messy. What lessons did you learn the hard way?
I wish I had had more confidence at potty training. I incorrectly believed it was an insurmountable task with a child who had Down syndrome. That was reinforced by experts and other parents. Thorin and I ended up going to a behavioral clinic called Potty University. I learned quite rightly that I was the problem. I was messaging to him that he couldn’t do it. He could do it—and easily, I might add. I bought into a diminished view of my child. As parents, we can either confirm our child’s sense of self or send anxious messages. My anxiety caused a tremendous amount of pee outside the bathroom. Very messy.
Is there an easy way to learn anything about parenting?
Treat your relationship with your child like any relationship. You do not know everything. You will make mistakes. Same for your child. The golden rule isn’t a bad idea either. And remember, your child has a central nervous system: Yelling and screaming is damaging to it.
What do you think many parents today get wrong about parenting?
We overparent. It exhausts the child and the parent. Pick your battles. Good grief, there is so much you can just ignore. I don’t ignore safety issues, but the rest of it—the annoying and niggling behavior? Just go in the other room.
Many parents today, especially in the middle and upper class, seem to be trying to develop a perfect child. What’s your take on that?
We are all susceptible to insecurities. If we are intent on comparing our children to other children, we will forever be lost and our children will be, too. There is no perfection, thank goodness! Parents can be facilitators of the individual experience or dictators of the masses.
What was the biggest mistake you made, and what did you get from it?
I didn’t understand that our son was falling apart because of school. Ward and I were so intent on fighting for inclusion in school for our son that we failed to see that a 6-year-old boy is not an effective social change agent. I’m using social work lingo here, but Thorin’s job was to learn, not to change an archaic system that is hostile to children with disabilities. For us that meant: Thorin, who lives with Down syndrome, does not have to stay in school to try and make the system better for all students with disabilities. Instead, Thorin can leave school to learn at home, which has been a fantastic journey.
Your book is astonishing in revealing how confidently and lovingly you approached creating a relationship with your son. How far do love and confidence go in the child-raising business?
What I had going for me is that I completely fell in love with this little person. My only thought was, How can I make this work? My son called me Ba for 18 months instead of Mom. I could have been devastated. Instead I thought, “Yeah it sucks, but whatever.” I worked on not taking it personally, which I find works for most of parenting.
The parent experts in our adoption classes told us emphatically that love is not enough, particularly with children in protective custody. We didn’t accept that. We decided love is enough. But relationships take time, patience, and nurturing —therapy, crying into a pillow, screaming at the sky.
What is the single most important piece of advice you have for parents?
Children arrive as complete humans who continue to develop. Your job is to stay out of the way as much as possible. If they are very lucky, they can become who they were meant to be at a young age rather than going through life figuring out what other people want of them.
About THE AUTHOR SPEAKS: Selected authors, in their own words, reveal the story behind the story. Authors are featured thanks to promotional placement by their publishing houses.
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