“What Can I Do?” a Note for Special Needs Grandparents

familyToday I got a lovely note from a reader of one of my books, who asked for advice about how to have a better relationship with her daughter and the daughter’s adolescent child, who has special needs (unspecified). Her daughter didn’t really open up to her about what life was like, and the reader asked, “What can I do? Do you have any advice?”

Here is what I said:

Here are a few things I wish someone had told me when I first got my kids, that this woman can pass along to her daughter:

  1. Raising special needs kids can be exhausting – both physically and especially emotionally. Get as much rest as you can, and take care of your body as carefully as you tends to your child’s. It’s easy to turn to coping mechanisms like alcohol and sweets – and they do feel good going down. Balance it out with salads and water, to have the strength to keep going. Embrace  opportunities to nap.
  2. Don’t forget to enjoy your child. Every challenge has its silver lining – and your child has gifts, too. It can be tempting to focus on the things they CAN’T do so you can find work-arounds and supports. But be intentional about seeking out and affirming the things they CAN do well, whether it’s singing or joke-telling or running or coloring. They need to hear this from you, because if it’s all about the “you can’t,” they will give up trying.
  3. Celebrate the small steps and successes. This is probably one of your biggest jobs of a grandparent. Cards, phone calls, outings, babysitting (parents need down time, too), little gifts, making cookies together – whatever ways you can connect with your grandchild, do it. Do it as often as you can. Show you are as proud of THIS grandchild as you are of all your others.
  4. Pray regularly for your daughter and her family. There is a loud voice going off in her head (if she’s anything like me) accusing her of all the things she isn’t doing for her daughter, all the things she SHOULD have done and didn’t, and all the bad choices she thinks she made, based on the information she had at the time. Catch her doing good for your granddaughter, and admire it out loud. Affirm her ability as a mother – both to her special needs child and to her other children (if she has any). She may not be able to see it sometimes, and she needs you to encourage her.
  5. Don’t offer advice unless asked. This is a hard one for parents. Special needs parents tend to be great researchers, and have reasons for doing the things they do that may appear strange or even neglectful to you (my parents couldn’t understand why I didn’t turn my son over my knee when he misbehaved – and there were several reasons for this, including it is illegal to use corporal punishment on a foster child). Twenty years later, the kids still struggle, but their teachers and others tell me they are good kids. Twenty years from now, no doubt your granddaughter’s “circle” will say the same thing. So continue to affirm the good you see her doing, and keep your mouth closed in the tough spots. Follow her directions carefully, as the mom. It’s okay to ask questions for clarification or understanding – but not to second-guess her mothering.
  6. Did I mention, pray for your daughter and her family? Pray for her marriage, too. In fact, offer a rosary every day for her and her husband. That is the one most important thing you could do.


I hope that helps!



A Special Kind of Love (The Love Project, Day 22)

Today’s “love story” is about the Pelligrino family, an article by Jim Graves that originally appeared in the Catholic World Report. The mom, Francesca, expresses a reality for many special-needs families, of the toll that caring for a special-needs child can take on a marriage.

She is also grateful for the steadfast support of her husband Frank. In special-needs circles, the challenges of having a child with a disability can bring out the best and the worst in husbands. Some, like Frank, rise to the occasion and devote themselves to the care of their families. Others can grow distant and abandon the family.

Francesca is also grateful for the network of families with special-needs children which gave her support during “dark days.” She said, “I’ve met many wonderful people in a similar situation to mine, and they’ve helped me come closer to Christ.”

Today’s Love in Action: In times of stress, how do you get the support you need from those closest to you? Recognizing — and being thankful for — these tiny signs of God’s love can make the difference between facing the future with fear … or with hope.

A Mother’s Faith

This morning at 3:00 I woke up, angry. I stared at the ceiling, railing over circumstances beyond my control. Over a justice system in which there is no justice for those who need it most. Over the helplessness of being unable to protect or defend a twelve-year-old boy from the powers that be. I wonder, Blessed Mother . . . Is this how it felt for you to stand beneath the cross?

My stomach was in knots. I got up and went to the dining hall for a cup of tea. Then I vented in an angry email to my dear husband. That didn’t make me feel better, so I went back to bed and punched a pillow.

“Do you want to talk about it?” I didn’t know my roommate, apart that she was an elderly woman who has a healing ministry. “I’m good at listening,” she said.

She was right. She listened. And passed me a tissue. And listened some more. And asked if she could pray. And then, she spoke, gently and calmly.

First, she stood against the powers of anger and fear and helplessness. That last one really got me … for that is what had me in its grip. Then she asked the Blessed Mother to wrap my son in her mantle, so he would feel his mother’s love and protection. And she asked Michael to ward off the evil forces that are tormenting him.

In that moment, I felt the anger melt away, and my heart grow light.

“Talk to him now,” she said. “Talk to your son. Even though you are not biologically related, you are connected to him spiritually in a powerful way, and your angel speaks to his angel. He can feel you with him, and he can receive message in his spirit from you. Speak to him now — I’ll leave you in peace.”

And so I did. I spoke to him, heart to heart, in the privacy of that room. I realized, in that moment, that part of what I was feeling was undoubtedly Christopher’s pain and fear and anger. Ginny affirmed this. “And when you feel those things, ask the Blessed Mother to take them to her Son . . . and to transform them into love and peace, to send back to your son. God chose you as the mother of those children. He has given you everything you need to take care of them. All you have to do is ask.”

And so, on this first day in the Year of Faith, I held out my hand . . . and asked for the miracle I needed.

What miracle do you need today?

Weekend Ponderings: On the “Sinful Woman”

Today’s Gospel reading is one of my favorites — the story of the “sinful woman” and her loving tribute to Christ. When the woman is criticized for her extravagence and impropriety, the Lord defends her:

“I tell you, her many sins have been forgiven
because she has shown great love.
But the one to whom little is forgiven, loves little.”

This mystery woman is unnamed in Luke’s Gospel, but in John’s Gospel (chapter 11), the apostle relates a similar occurance involving the sisters of Bethany:

“Mary was the one who had anointed the Lord with perfumed oil
and dried his feet with her hair;
it was her brother Lazarus who was ill.”

The story of this family has always intrigued me. So often Mary and Martha are turned into spiritual stereotypes (Mary is the “mystical” one, Martha the poster child for practical service).  But when I read the story, I see altogether different themes:  I see an older sister who is left to tend to the needs of her younger siblings (according to tradition Lazarus was significantly younger than his sisters), whose life is a story of a woman whose own desires and hopes are sacrificed for the good of her family. I see a younger sister who is unable to share the burden, or even to care for herself — perhaps because she has some kind of developmental disability.

In other words, Mary’s are not the actions of a sinful woman … but a simple one, totally oblivious to the social implications of what she was doing. No doubt her sister understood all too well — and felt the full sting of the “guilt by association.”  

This kind of social guilt is all too familiar to “Extraordinary Families,” particularly those who have a member with emotional or mental impairments. The tantrums and outbursts, the inappropriate responses, the impulsiveness … All these things can greatly contribute to the daily stressors.

And so, the Lord’s observations pour out a healing balm upon us as well. Those who learn to love much, who pour out their lives in daily libation to “the least of these,” have a special place in the heart of God.

Photo credit: These image is a greeting card that may be purchased through the Sisters of the Carmel of Reno. Please support their ministry.

“Handle with Care” — The Language of Loss and Family

This week I’m savoring Jodi Picoult’s latest novel about an autistic teenager, “House Rules.” I’m looking forward to reviewing that one in an upcoming post; in the meantime, I wanted to re-post my review of “Handle with Care,” which I recently ran on CatholicExchange, as my readers have had trouble accessing the link. (Warning: Review contains some spoilers.)

In her most recent novel, Handle with Care, Jodi Picoult explores the intimate sufferings of family life, and brings into sharp focus the unique challenges of parenting a special-needs child. It also engages the reader with questions both timely and perennial: “Is all life worth living –and worth saving? If not, who should decide where to draw the line?”

Catholic social teaching has consistently proclaimed that human life is to be respected and protected from conception to natural death (CCC #2258). Consequently, to be truly pro-life is to be pro-family; to respect the dignity of life is to believe that families must be able to provide for their basic needs, and that women in crisis pregnancies must be supported in their efforts to plan for their child’s future, whether or not they choose to parent the child themselves. Only by attending to both these issues can we ever hope to permanently and completely eradicate abortion.

Special considerations arise when unborn children are diagnosed with congenital defects. Current statistics reveal, for example, that over 75% of unborn children diagnosed with Down syndrome are aborted (this website puts the figure as high as 90%).

This condition gained national attention thanks to Sarah Palin, who pounded the campaign trail with her infant son pressed against her shoulder, his flattened profile drawing much-needed attention to the thousands of Downs children whose parents have welcomed them for the gift they are, both to their families and to the world. And yet, these parents – and their children – also face extraordinary challenges: recent medical advances make it possible for a significant percentage of Downs children to outlive fifty years and more, necessitating long-term adult care.

“Handle with Care”: An Overview

In Handle with Care, Picoult portrays a Catholic couple facing a different kind of challenge: their child Willow was diagnosed with Type III osteogenesis imperfecta (OI, also known as “brittle bone disease”). In the book, Willow is a precocious six-year-old whose tiny body is so fragile that a sneeze or even a hug could shatter a bone. In six years she’d suffered sixty-eight breaks – seven of them at birth.

Willow’s parents, Sean and Charlotte O’Keefe, love their daughter fiercely, and spend their lives trying to keep her safe and comfortable. But money is tight – Charlotte had given up her job as a pastry chef to tend to her daughter full-time, and her policeman father’s salary is stretched to the max. The money doesn’t cover the many things their daughter needs – special operations, treatments, and living accommodations. It adds up. Sadly, the tensions of their situation manifest themselves most profoundly in their other daughter, Amelia (Charlotte’s child through a previous relationship).

To obtain a measure of relief and financial security for their daughter, Charlotte brings a “wrongful birth” suit against her ob-gyn and former best friend, Piper, arguing that her doctor ought to have recognized what was in store, and counseled Charlotte to abort her child.

What kind of parent would do such a thing? Most parents can’t imagine it -– but then, most people never experience the daily, unrelenting, bone-wearying challenge of parenting a suffering child. While many parents of special-needs children see those children as pure gift, and find great joy in their calling, there is also an undeniable sense of loss and suffering for the whole family – parents, siblings, and even the child himself. There is no glossing over the broken dreams, for the child and for themselves; they must admit – if only to themselves, and to God – exactly what has been lost.

Learning to “Hear” The Language of Loss

One flash back scene in Handle with Care offers a poignant illustration of this. Charlotte and Sean escape a doctor’s office after hearing their unborn child’s OI prognosis. Rushing to the elevator, they encounter a mother and her teenage son. Sean recalls:

To my right was a woman about ten years older than I was, pushing one of those state-of-the-art wheelchairs with a child sprawled across is. This one was a boy in his teens, thin and angular … his tongue – thick and jellied – filled the bowl of his mouth. “Aaaaah,” the boy sang. “Aaaaah!”

His mother touched her hand to his cheek. “Yes, that’s right.”

I wondered if she really understood what he was trying to say. Was there a language of loss? Did everyone who suffered speak a different dialect?

In truth, this passage touches on one of the most profound realities of loss: The language of suffering does not always translate readily from one person to the next. All we can do is listen and encourage, and maintain the connection of community – spiritual family – to the best of our ability.

Sometimes even small gestures can mean a great deal to parents who are struggling in the trenches. On the last day of Vacation Bible School, one mother presented me with a beautiful bouquet to thank me for including her special-needs child. Little “Mikey” was paired up with a dedicated helper, and walked from station to station with the other kids, laughing and singing and giving hugs with great gusto. Frankly, I didn’t need the flowers – his presence had been gift enough. But his mother had been grateful that we made a point of including her son, and giving her a break for a few hours each day.

The special needs of children touched by adoption and foster care, who speak their own “language of loss” also present unique challenges to their parents. I’ve experienced this with my own children, who (like many foster-adopted children, who remember their first parents) continue to grieve the loss of their first family.

The prospect of having to deal with this “language of loss” overwhelms some prospective parents, who are fearful of getting involved simply because it might “hurt too much” if the child goes away. And yet, to be truly pro-life is to risk our own comfort in order to come alongside not only pregnant women, but abandoned children as well.

Lives of Courageous Joy

“Those touched most deeply by suffering have the greatest capacity for joy.” This is true no matter how our children come to us. Biological parents endure the sleep deprivation and isolation of early parenthood, to the ashes-in-the-mouth foreboding of adolescent choices gone horribly wrong.

“Extraordinary parents” – those who come alongside first parents to tend to the needs of the child, whether temporarily or permanently – endure multiple losses as well: from reproductive challenges to the sobering realities of parenting traumatized children with whom they share no biological connection. Parents of special-needs children – whether that child is “home-made” or adopted – walk their own little Via Dolorosa . . . indefinitely.

And yet, there is also undeniable joy: The joy of rediscovering the world through your child’s eyes. Catching frogs and butterflies. Making flower crowns for the Mary statue in the garden. Building block towers. Going to Mass together, and celebrating at McDonalds when you manage to get through the whole hour relatively without disruption. Reading – and rereading— favorite childhood stories. It all comes back with a rush.

These simple joys – perhaps especially in families with special-needs children, whose dependency extends indefinitely into the future – are the currency of family life, the stuff that fills the “love banks” and keep the graces flowing in good times and bad. And in the adversity of family life, we encounter another kind of healing grace. We begin to relate to our parents – and to one another—in ways we could not before. As parents, we can empathize, and we can forgive. Where once we spoke, as St. Paul said, “as a child,” as parents we find ourselves able to converse in the language of parenthood.

Handle with Care reminds us that this language of parenthood is not without its limitations. Despite our best intentions, our noblest endeavors, we do sometimes inflict pain on those we love most. But this story also points to the resilience of family ties – how the language of loss and pain and does translate into the language of healing and forgiveness. The language of family love.

Miracle Monday: “Aren’t I Beautiful?”

Today I stumbled on this story from columnist Joe Orso (LaCrosse Tribune), who talks about a teacher who finds a naked kindergarten child with Down Syndrome in a school bathroom . . . and who still remembers the inspiring encounter years later. I thought I’d pass along the joy! Click here: share

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Founder of Special Olympics Dies

Today Lisa Hendey posted this article about Eunice Shriver, founder of Special Olympics, who recently died at the age of 88. This powerful member of the Kennedy family did her best to advocate for the most marginalized members of our society, the mentally and developmentally disabled. (Her sister Rosemary was mentally disabled.)

Here’s one from the Houston Chronicle. It states in part, “In 1993, U.S. News & World Report paid Shriver what is perhaps the highest compliment. Assessing her work with the Special Olympics, the newsmagazine concluded that her efforts on behalf of the mentally disabled could well be the most enduring legacy of her generation of the Kennedy family.”

Rest in peace, Mrs. Shriver — a truly Extraordinary Mom.

EMN Mailbag: Hope for RAD (Reactive Attachment Disorder)

Today I received the following note in response to my recent post on the subject of parenting a child with Reactive Attachment Disorder (RAD). I thought I’d pass it on!

I was moved by your post about the mom with a child with RAD.  Please pass along that there is hope!  We have a faith-based program in Quincy, IL that yields amazing results. Please send her to our website at www.chaddock.org or have her give me a call as we always have people who are willing to talk who live with RAD every day.  We’re also working on a parents guide to developmental trauma and attachment.  As soon as it is ready I’ll post it on our website. 

Most importantly, please let her know she is not alone and there is hope for these amazing and wonderful children!

My best wishes, Karol

Karol Ehmen
Associate Director of Marketing
205 S. 24th Street
Quincy, IL 62301
(217) 222-0034 Ext. 324
FAX (217) 222-3865

Miracle Monday: “Beyond Consequences”

The Austin paper the other day ran an intriguing story about Twyla Loftin, an adoptive mother whose child has emotional challenges that she learned to respond to with a methodology called “Beyond Consequences.” This system acknowledges that when children act out, it is often out of a place of fear rather than rebellion.

I plan to be picking up a copy of this book myself . . . very soon! In the meantime, I’ve added the author’s website to the “Special Needs” and “Parenting Resources” blogroll at the right.

Miracle Monday: A Special Needs Child Aspires to Religious Life

schoolchildren-circleHappy Day after Mother’s Day! I hope you had a great weekend.

The other day I came across this article by Karen Wolff at CatholicMom.com entitled “Perseverance is the Key.”

Karen has a twenty-three year old daughter, Amanda, who has special needs. All her life she has worked hard to learn and grow, and to become independent. She wants more than anything to be a nun — but finds that most communities are not open to receiving a special-needs member.

When you read Amanda’s story, I hope you’ll pray with me that Amanda’s steps will be guided to the special community that needs her most.