Special Needs Teens: Afraid to Dream?

jesseAs children grow, it’s only natural for parents to dream of the day they become full-fledged adults, capable of making their own decisions, paying their own bills, and deciding where to live and work.

When you’re raising special needs teens, however, that dream can take very different forms. For us, the dreams are less often about personal achievement than a quest for simple independence:

  • If we invest in that private tutor, negotiate the right IEP, nag and push until we are blue … can he get him to squeak by enough of his classes to get a diploma?
  • Can she really live with her friend in an apartment, or is she going to need a group home and a guardian?
  • If he gets a certificate of completion, what jobs can he get after graduation?

Yesterday my friend Diane and I went to an event at Goshen College for parents of adult (and soon to be adult) children with developmental disabilities: Down syndrome, fetal alcohol syndrome, autism spectrum, and other life-long disabilities. As parents of disabled teenagers, we needed to make plans to help him transition to some kind of independence.

In addition to the keynote sessions on creating trusts, guardianship (and less drastic alternatives, and how to secure disability services (from the Bureau of Developmental Disabilities Services, or BBDS – pronounced “BEEDS”), there were a variety of organizations represented to help families make timely, informed choices. Here are some of the organizations that caught my attention:

  • The Arc Indiana (Indianapolis, Indiana). Karly Sciortino-Poulter, their Outreach Grants Administrator, presented information on guardianships and guardianship alternatives (such as limited guardianships, powers of attorney, healthcare and/or educational representatives. She also urged families to make a “future plan” using the “Center for Future Planning” tool (https://futureplanning.thearc.org/) to guide conversations to protect and provide for the disabled adult while allowing him or her to participate as they are able in the decision making process. For more information, call 800-382-9100 and ask for Laura.
  • Camp Mariposa (www.moyerfoundation.org; summer camp for students with disabilities, with other camps specifically for children who are living with a family member coping with addiction or bereavement). Founded by the Moyer Foundation, with branches in Seattle and Philadelphia.
  • Erskine Green Training Institute (Muncie, Indiana: erskinegreeninstitute.org) This post-secondary school certificate program is for disabled adults who have obtained a diploma, GED, or certificate of completion. Each ten to thirteen week session prepares students for careers in hotel, medical, and food industry.
  • Logan Institute/Community Resources (South Bend, Indiana, logancenter.org). Provides social, emotional, vocational, and other support to people with intellectual and developmental disabilities – including residential services and family supports.
  • GateWay Services (Benton Harbor, Michigan gatewayvro.org). Provides transitional and independence services for disabled adults in Michigan.

If you have a teenager and need to make a transition plan, and are a resident of Indiana, I suggest you begin by reaching out to the Indiana Family & Social Services Administration (100 W South Street, Suite 100, South Bend, IN: 877-218-3059). Or contact the Arc to begin the process. The application for BDDS can take a year, so it’s best to begin the process well in advance of the child’s 18th birthday.

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
Chaddock
205 S. 24th Street
Quincy, IL 62301
(217) 222-0034 Ext. 324
FAX (217) 222-3865
kehmen@chaddock.org

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.

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