Monday, May 10, 2010

'Burdens and blessings'

‘Burdens and blessings’
By Amy Julia Becker
“Penny’s tough.”

He said it because he wanted to support us. Peter and I were on vacation with close friends, and we had asked for parenting advice. That week, Penny just hadn’t been able to keep her “listening ears” on. She hadn’t “controlled her hands.” She wriggled and squirmed and ran away. She dumped milk on the counter. She refused to use the potty. She even pulled our friends’ daughter’s hair. So with the kids in bed, we were sitting at dinner bemoaning our lot as parents, wondering what we were doing wrong.

So when our friend said, “Penny’s tough,” he meant it as a consolation. He was encouraging us: We were doing our best. We shouldn’t be beating ourselves up. But I felt a little sick hearing those two words uttered from the mouth of the parent of three typically-developing children. I felt as though I had betrayed Penny, even as though I had betrayed kids with special needs in general.

Most of what I say to friends or write about, when it comes to Penny in particular and Down syndrome in general, is positive. Genuinely positive. When I hear that a baby has been born with Down syndrome, my gut reaction is, “Congratulations!” I want to get the word out that children with special needs really are special, as in, valuable, and deserving our attention and resources and care. That’s why we participate in a program through a local medical school and have doctors-in-training over for dinner. That’s why I write about the love and laughter in our family. I want to promote an ethic of inclusion. I want the rest of the world to know the goodness, the blessing, the joy, of welcoming children as they are given to us.

But all my positive stories and genuine joy in our child sometimes means I have a hard time talking about the hard stuff. I have a hard time admitting that life with a child with special needs can, indeed, be tough. That potty-training has taken two years and counting. That I wish I didn’t know the route to the Children’s Hospital of Philadelphia by heart. That there was a night last spring when Penny could have died of dehydration from a stomach bug. That I hear people making comments about where their children will go to school or who they will marry or even how many grandkids they will have, and I sometimes feel sad, not knowing what possibilities are out there for our daughter. If I talk about those thoughts and experiences and feelings, I’m afraid I will only perpetuate an impression that children with Down syndrome (and other disabilities) are burdens. Or that somehow, Penny’s existence is less than complete. That somehow, it is sad that she has Down syndrome. Or sad that she is our daughter.

I read a few years back that there's a difference between pity and compassion. When people take pity, it’s a distancing mechanism. It’s looking in from the outside and saying (whether by word or action): “I’m sorry for what you’re going through, and I’m so glad that I’m not you.” But compassion, a word whose root means “to suffer with,” is looking in from the outside and saying, “I’m sorry for what you’re going through. How can I enter into this hard place with you?” I don’t want people’s pity, and yet I wonder how often I have, in trying to avoid pity, instead closed myself off to compassion.

We had a medical school student over for dinner last week. He spent 30 minutes alone with Penny. I could hear her giggling and instructing him “Help me draw a playground!” and showing him how she wrote her name and reading books to him.

“How do you think it will impact William to have a sister with Down syndrome?” the student asked me, after she had gone to bed.

I talked for a while about the blessing I thought Penny’s life would be for him, how she would show him that character counts more than achievement, that value in life comes from who we are not what we do. The med student then asked, “Has it been harder having a child with special needs than a typically-developing child?”

I took the risk. “Well, yes and no. William cried for the first six months of his life, whereas Penny slept through the night at seven weeks. But with Penny, we did have therapy four times a week for about a year, and there are more doctors’ visits, and I do find myself worrying about whether she will have friends when she gets older.” As soon as I said it, I wondered, again, if I had betrayed her.

But he responded, “You know, I look around your house, and having spent time with your kids, I think this is a life I could aspire to. And I mean all of it, including having a child with a disability. Somehow it seems to make your life even better.”

He’s right. Somehow the hard stuff and the joy are related to each other, and together they are leading us more and more into a life of gratitude. Talking with honesty about it all doesn’t betray Penny, any more than it betrays colicky babies to talk about William’s first few months of life. And although I think parents of children with special needs do experience struggles of a more intense nature than most parents of typically-developing kids, all parents need a safe place to admit the stuff that’s been hard lately. So I’m going to try to create that space, to talk about the burdens and the blessings of our life. To trust in the compassion of our friends and family. To trust that what’s 'hard' is part of life, and a part of love.
Amy Julia Becker, mom to Penny and William (above) is a writer and a student at Princeton Theological Seminary in New Jersey. At Thin Places she blogs about "theology, disability, children and parenting, education, and the intersection of grief and hope."


It is harder, overall, to have a child with a disability than not. I think it is really important to be honest about that, with others and ourselves. But being honest about that does not mean that "harder" should be translated into "less desirable" or "to be avoided at all costs."

Nor does it allow us dismiss how hard it is to raise ANY child and go around with a chip on our shoulders about all those other ridiculous parents who don't know how good they have it. (I admit...this one can be a little hard for me. We go to the emergency room A LOT. So I find it really hard to be sympathetic when a friend goes on and on about their ER trip for some minor little thing that probably didn't need the ER to begin with. But I know, from having two children without disabilities, that parenting is hard, hard, hard no matter what.)

And I also think it's vital that we avoid the polar opposite of being overly focused on how hard things are, which is to focus on the "specialness" of our kids and make them into superhuman angels. Our kids do often have qualities that set them apart from others--they may be more empathetic, more mature, better able to converse with adults, have a high tolerance for pain, etc. But if we focus only on those qualities, we diminish them as humans. One thing I really valued about my upbringing (as a child with a disability) was that I was allowed to rant and rail about how unfair it all was when I needed to. And I always resented (still resent) news stories about the extraordinary-ness of kids with disabilities. I never wanted to be extraordinary. I just wanted to be OK.

Thanks so much for sharing. I can defintiely relate to how you are feeling & I'm sure that there are countless others out there who feel the same way.

thank you for posting this. as an early intervention/early childhood physical therapist, i would never have thought that a parent might view speaking about the challenges their child faces and that the family faces as a result of a disability or delay as a betrayal of all that their child CAN do and the family IS. this helps me understand better where some parents are coming from. thank you for posting.

When you write about not wanting to betray Penny by admitting that there are aspects to parenting a child with special needs, I understand. In fact, your whole post hit chords with me right until the end.

Truly, a great post.

I completely relate to this and I think it stems from the general devaluation of kids with disabilities in our culture. So as parents, we never want to feel like we're somehow contributing to that -- which puts us in a tough spot when we need support.

And I agree with Ellen -- harder doesn't mean less rich or meaningful or worthwhile.

I'm glad Elizabeth posted that as a professional, she wouldn't have intuitively understood this bind we sometimes feel ourselves in.

Thanks so much Amy Julia for writing this beautiful piece!

It is very hard to bring up kids with disabilities...they need extra doze of love and patience and tolerance.Sometimes with the busy schedule and hectic life it is hard but ypur thoughts are very affectionate for your child.I am sure there will be signs of improvement.

Beautiful I really enjoyed that post too, I see life with my special girl as something to be truly celebrated. She brings out the best in people. I feel like it's a true blessing to be her mom. I have four kids and honestly I don't find it's any harder to bring up Ashley then the other 3.


Thanks for sharing! I am an occupational therapist who works with infants and toddlers with special needs in their home/community setting. I get the opportunity to see parents move from denial to acceptance to wanting to be the best parents ever of their special needs child. One thing I love to see is when the various parents get togehter and discuss what's "tough" about their child as well as ideas to help. I think it is so important to have that opportunity to vent! Parenting any child is difficult, and I do think parenting a child with special needs can be even more of a trial, especially if the child has multiple medical problems. My heart goes out to you and I pray that you can be the best parent for both of your kids! Penny is a blessing just the way she is!

Children with special children should be treated with kindness and care.They are usually not respected...they have a right to do every other thing a normal child does.We must not be unkind to them.There is also a lot of medical help these days including surgery that could help the special children.