Once a week I compile the reflections I’ve offered on Facebook into one blogpost. Here are some thoughts from the past few days.
July 13th, 2018
On Saturday, I picked Penny up from Camp Pals. Each week of PALS ends with an opportunity for campers and counselors and parents to share with the entire group, and I sat next to our daughter for an hour listening to all these people speak about the impact of spending a week together.
The counselors were all intellectually typical people. One of them has been volunteering his time each year for nine years running. What began as a teenage experience has carried him into his twenties. Others were there for the first time, and they gushed about how the week had changed their lives. They spoke about learning what it meant to live life “to the fullest,” and about what it means to be human. Spending a week with a group of people who have been rejected by our society at large–people who do not “measure up” on standardized tests, people who will never achieve “success” in our meritocratic culture–didn’t evoke pity or impatience. It evoked joy and gratitude.
When I got home, the first thing I read was David Brooks’ article about the new documentary about Fred Rogers’ (aka Mr. Rogers) life. Brooks writes, “And here is the radicalism that infused that show: that the child is closer to God than the adult; that the sick are closer than the healthy; that the poor are closer than the rich and the marginalized closer than the celebrated.”
Our beautiful daughter is closer to God because she is closer to her humanity, closer to her vulnerability, closer to her need for others, closer to honesty, closer to so much that matters. She is more quick to laugh. She is not in a rush. She does not hold grudges. She is closer to love. She is closer to the heart of God, and our culture rejects her, and people like her, from the moment of conception on through their lives. I stood in our living room with my phone in my hand thinking about Mr. Rogers and about Camp PALS and the gift of this child, and the tears streamed down my cheeks.
Here’s the reality–if I want to participate in the kingdom of God, if I want a glimpse of who I could be if I surrendered my perfectionism and my striving and achieving and my pretenses of invulnerability, my pretenses of limitlessness–then I must embrace my daughter, and I must embrace the part of me that is just like my daughter. I must embrace all the other people who are marginalized and dismissed, who are “burdens,” and I must see myself in them. The ones who speak out of turn. The ones who drool. The ones who sing off key and dance off beat and wear mismatched clothes. I am not embracing them with pity, or even compassion, but with connection, with understanding, with a deep gratitude for our common humanity.
July 17th, 2018
Every summer, I face the same dilemma as many parents–I want our kids to have a summer with lazy mornings and sunny afternoons and fun with family and friends. I also want to get some work done. Which is to say, every summer, I sign them up for camp. (As an aside, this in itself is a sign of advantages we have as a family–camp is expensive and it usually requires a parent who has flexible hours since it rarely extends for an entire work day.)
But camp is not easy for kids with special needs. It’s a new environment, with new skills required and new teachers and new peers. We learned years ago that Penny would be inclined to test her teachers in a new setting, and we also learned that most teachers would respond by coddling her. So instead of playing kickball, she would bring a book and read on the sidelines. Instead of participating in an activity, she would sit in the corner and take notes. Instead of engaging with peers, she would latch on to one counselor and befriend them.
We started giving behavior tips to everyone at the beginning of camp. We tried to emphasize Penny’s abilities and push teachers and counselors to hold her to high expectations. And while these tips helped, and most adults and leaders truly love Penny and have helped make her the shining young woman she is today, it was also always an effort. I was always holding my breath a little bit, wondering how it would go.
On the final day of Camp PALS, the camp Penny attended last week which is designed for teenagers and young adults with Down syndrome, a few parents stood up to share about their experiences. Two different mothers talked about how they had received “behavior calls” over the course of the week.
I’ve been on the receiving end of those calls before–the time Penny decided she had an arch-enemy at school, the time she walked out of science class without permission, the time she disappeared during a school performance. I know the sinking feeling, the sense of desperation, the desire to plead with whoever is on the other end to please please please give my child another chance and please don’t write her off and please see her for who she is. These other moms have gotten those calls before too. All of us know what it feels like for the world to see our kids as problems to be managed rather than people to be loved.
For what it’s worth–and it is worth a lot–the teachers in Penny’s life have almost unanimously been on her team. They don’t give up on her. They cheer for her and champion her. They emphasize her strengths and they want to work together for her good. But that’s not always how it goes.
At Camp PALS, both of these mothers said, they got behavior calls from people who didn’t see their children as problems. They saw them as young adults who needed help. They called because they wanted to reach out to someone else who knew and loved this person and might be able to help care for them better. The parents were in tears. Their children were ready to come back for another week of camp, to be in a place where people assumed they were people.
It makes a world of difference to be loved instead of managed.
July 18th, 2018
Here’s my last and final word about Camp PALS. To be more accurate, here are Penny’s words about Camp PALS:
“I would recommend Camp Pals because you have to have Down Syndrome to go to the camp. I would also recommend it because of the fun activities and the fun holiday spirit when we celebrated the 4th of July. The counselors and the campers were crazy excited. I want to go back because my counselor was really nice and she talked to me everyday. She also let me read before bed but one time she did not let me because we got back from a field trip late. I was hoping that I could still have time to read when we got back but she said no because it was late and I needed my rest for the next day.
It was the best camp all summer because it was nice to be away and independent for a while. Also, it was great not having my brother and sister bossing me around when I did not have to do chores.
Camp PALS was a blessing towards all of the campers and watching all the people grow with different perspectives in one another. Also they asked us questions about different people and I got to hear different answers from everyone because it was a miracle to be away from my family and it was relaxing and calming and peaceful.”
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