What it is like to parent a child who can never be left alone

Coping with the well-meaning but hurtful comments of those on the peripheries is one of the hardest parts of parenting a special-needs child. This woman speaks her truth with great courage … pass it on to someone who needs a dose of empathy! (Then pray for this family. Thanks!)

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When your baby is born you promise them the world. You promise to look after them, keep them safe and be there for them. When they are tiny and lying so innocently in your arms fully dependent upon others to meet all their needs it is so easy to promise them you will never leave them.
The reality is though that children grow. As they grow they need to learn responsibility, resilience, and independence and all three of these require periods of not being constantly supervised by a parent. I want to say I never ever set out to be over bearing, or a so called ‘helicopter parent’ or paranoid in any way.

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Unfortunately though life changed the way I parent my son. He has multiple difficulties and wether I want to or not he simply can NOT be left unattended at any time, even at age 8.
Going to…

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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.

Crafts for Lent!

Advent-and-Lent-paper-chains-resuseableAre you looking for some fun things to do with your family as we journey toward Easter? Today I came across Monica McConkey’s blog Arma Dei, and her post entitled “Equipping Catholic Families for Lent” as part of the Catholic Women Bloggers Network Lenten round up. You can find more Lenten-themed blogs on Allison Gingras’ blog Reconciled to You.

Stay tuned for the next round up on March 21, when the Network will be buzzing about … true stories about going to confession!

The Last Mile: To My Son on His 17th

heidi-2016Originally I posted this at “A Mother on the Road Less Traveled.” But since we are in the middle of #40Day Challenge: Mother Teresa Edition, I decided to move this tribute here.

Because of the pictures I post most often on my blog, it would be reasonable to assume that we have only one child: my incandescent fifteen-year-old who never met a camera lens she doesn’t like.

But today we celebrate the birthday of another child who, though allergic to getting his picture taken (ahem), is also my pride and joy.

He turns seventeen today. Yes, on Ash Wednesday. Father says he can still have birthday cake – though he can offer it up if he wants to. (Which he probably would, so long as I give him the same weight in frozen blueberries.) We have one more year together until he finishes high school and officially launches himself into adulthood. Christopher, in honor of your birthday today I want you to know 17 reasons I’m so grateful God brought you into our lives.

  1. You’re my “homeboy.” Unlike Sarah, who can’t wait to launch herself into the big, wide world, you are happiest here (well, here with your girlfriend). And though you spend most of your waking hours in the toxic zone of your room, because it is your birthday I won’t go there!
  2. You are funny. Your classmates and teachers, your friends, and your family all delight in your wicked, playful, Christopher-ish sense of humor. Yes, you sometimes use it to get out of trouble (who wouldn’t?). But you are one funny guy.
  3. Your smile. The sight of that roguish grin makes me all warm inside. Like sunshine on a cloudy day. You long for braces … and you will get them. But I love your smile just the way it is.
  4. Your art. You love your colored pencils, and have killed whole trees in your drive to capture the perfect animae character. You have an artist’s soul.
  5. You are kind and loyal. Two of the qualities I most admire about your dad, you have in spades as well. Despite all the changes in your life, you hold your friends fast.
  6. You love fiercely. It takes my breath away — and frankly makes me a little scared for you — to see how you give yourself to your friends without holding anything back. I pray that they will always return the favor.
  7. You believe, no matter what. When your schoolmates challenge and tease you, you don’t back down. You know what you believe, and stick to it in good times and bad.
  8. You can see your future, and know what you want. That house in Michigan, a good job, and a family. In an age when marriage is a shaky institution, you aspire to be a good husband and father. That makes me prouder than I can say.
  9. Your compassion. Even when your sister annoys the snot out of you, at the first tear you are visibly moved to reach out to her.
  10. Your eyes. They dance when you are happy, they cloud over when life gets hard. Those clear blue orbs really are a window to your soul.
  11. You are easy to make happy. A large bowl of ice cream (with blueberries, if possible) with your girlfriend and an animae cartoon … Or an afternoon with Jacob on his farm. These are the things that light you up.
  12. You try. When you mess up, you do your best to fix it. Over and over again, you start over and keep trying. That’s a hard skill … and you have it.
  13. You take to heart my advice. You don’t always look like you are listening … but I see you taking up the challenge.
  14. Your balancing act. Part boy, part man … all heart.
  15. Your quest for goodness. You sometimes mess up (we all do). But I have no doubt that, in your heart, you want to be a good person and make the right choices.
  16. You trust people. Despite all the difficult hand life has tossed your way, you keep reaching out.
  17. You call me mom. You are the only boy in the world with that particular challenge. Because of you, my heart lives outside my body — and I have the privilege of helping you achieve your dreams. I’m so proud to call you my son.

Happy Birthday, Christopher!

8 Ways Mother Teresa Changed My Life (Day 2)

In celebration of the canonization of Saint Teresa of Calcutta (Mother Teresa) on September 4, I would like to share with you eight lessons and prayers that I discovered from reading Mother Teresa’s writings. Feel free to share some of your favorites as well! Yesterday I wrote about the first “lesson” — The Power of Loving the “Other.”  I will write one lesson each day. Enjoy!

 

Lesson #2: Always Take Mary With You

Trains ready to depart Sealdah Station, Calcutta, 1944_2Today marks the ninth anniversary of the “home going” of Saint Teresa of Calcutta, who died on September 5, 1997. Although she became “Mother Teresa” when she took her vows with the Loreto teaching order in 1937, Mother Teresa didn’t become “mother” in the full sense of the word until nearly a decade later, on September 10, 1946 (the image here was taken two years earlier). She was recovering from an illness following the Calcutta Riots when she took the train to a retreat center in the mountains when she received her “call within a call,” in which the Lord revealed to her that she was to work among the “poorest of the poor,” to satiate the thirst of Jesus for souls. When I read about this, I wondered at God’s timing — why he would ask her to turn her life upside down like that, when she had already suffered so much. But then, the riots revealed the deep need of the people in an unforgettable way. It is no wonder that Mother Teresa would have felt compelled to act, no matter what.

In 2009, her private letters and journals were published in a remarkable book called Mother Teresa: Come Be My Light. Many were shocked to discover that, despite the great joy and tenacity she embodied all her life, in reality her “beloved” often felt very far away. Perhaps for this reason, Mother Teresa always stayed very close to the mother of the Lord, invoking her frequently in prayers like this one:

Immaculate Heart of Mary, our Queen and Mother, be more and more our way to Jesus, the light of Jesus, and the life of Jesus in each of us…

She turned to Mary whenever there was a need, at times invoking the Memorare ten times (the first nine as a novena, with a tenth as a prayer of thanksgiving). One of my favorite stories about Mother Teresa and Mary is found in Mother Teresa: Reaching Out in Love. It seems that Mother Teresa had been presented with a lifetime railway pass for herself and a companion, in gratitude for her work on behalf of the poor. To celebrate the Feast of Our Lady of Fatima, Mother Teresa brought a large statue of the Madonna onboard with her, so that people would see it and pray. The train conductor protested; the free ticket did not include a baggage allowance, only a seat for a companion. “She IS my companion,” protested Mother Teresa. “I talk to her, and she listens, and sometimes she talks to me. So I will not pay” (p.40).

This devotion to Mary is something I came to understand only gradually, and well after I became Catholic. Like Mother Teresa, my call to motherhood transpired when I was well into my thirties — and, like Mother Teresa’s call, it came seemingly out of the blue. Every time I went into inner-city Detroit to go to class at Sacred Heart Seminary, I would pass by Catholic Charities, and eventually my husband and I decided to go and register as foster parents. It was a complete change of life for us, and more than once I turned to the Blessed Mother and begged her to help me, often standing in the shower (the only time I was alone) that I would get through the day. “You were the perfect mother, and had one perfect son . . . I have neither of these things! Pray for me, Mary.”

And Mary always drew me closer to the source of grace, to her son Jesus.

It doesn’t really matter how we become mothers — through childbirth or adoption or foster care, while in our teens or in middle age, accidentally or after long bouts of infertility. Each of us has a place in the lap of Mary, where we can go when times get hard.

Saint Teresa of Calcutta, pray for us!

 

If you are enjoying this series, you might also enjoy my two new books on her life and writings: Advent with Saint Teresa of Calcutta (preorders ship 9/16) and Lent with Saint Teresa of Calcutta, (preorders ship 1/17), both available through Servant Books/Franciscan Media.

Photo credit: “Life in Kolkata – 1944 Part 16

“Trains ready to depart Sealdah Station” from the Hensley Collection

8 Ways Mother Teresa Changed My Life (Day 1)

One Heart Full of LoveIn celebration of the canonization of Saint Teresa of Calcutta (Mother Teresa) on September 4, I would like to share with you eight lessons and prayers that I discovered from reading Mother Teresa’s writings. Feel free to share some of your favorites as well!

Thanks for reading!

Lesson #1  The Power of Loving the “Other”.  I first discovered the writings of St. Teresa of Calcutta riding at the back of a cross-country bus in Mexico. A recent Bible school graduate, I had been presented with two options: Spend a year in Singapore, helping to start up a new Bible school for local pastors-in-training, or going back to school and becoming a book editor. I decided to take a few weeks to visit missionary friends, traveling by bus from Acapulco to northeastern Mexico. The adventure gave me plenty of time to think.

My backpack contained only a few essentials: a few apples, a roll of TP, a change of clothes and toiletries, my Bible and journal, and two books that had been recommended to me — Elisabeth Elliot’s autobiographical These Strange Ashes, and Mother Teresa’s, One Heart Full of Love. Early in the book, Mother Teresa recounts a story of going to help a local Hindu family with eight children who had not eaten for days. She writes:

“I could see the specter of hunger drawn on the faces of the little children when we found the family. . . In spite of their need, the mother had the courage and compassion to divide the rice that I had brought into two portions. Then she went out… It seems a Moslem family with the same number of children lived across the street. She knew they were hungry, too.”[1]

Her act of no-strings-attached generosity surprised me. I had been taught that “real” missionaries always focus on spiritual needs. And yet, nowhere in the text did it appear that Mother Teresa had prayed with the family as she handed over the food. What was more, she had clearly seen in that Hindu mother something. . . virtuous. What did it mean? Could one truly share the love of God in such a simple way, without expectation that the gesture would lead to a Bible study? This was an uncomfortable thought planted in my evangelical brain.

Mother Teresa’s “ecumenical mindset” flew in the face of my missionary training, which had elevated “church planting” over any other kind of service. I had not yet discovered the corporal and spiritual acts of mercy as such, or set foot in a Catholic Mass. And yet the words and actions of this dear “saint of the slums” resonated in me, and reminded me of the words of the Lord in which he separates the sheep (which up to that point I thought meant “Bible-believing Christians”) and goats (“everyone else”). And yet the example of Mother Teresa (a Catholic!), made me look again:

When the Son of Man comes in his glory, and all the angels with him, then he will sit on the throne of his glory. All the nations will be gathered before him, and he will separate people one from another as a shepherd separates the sheep from the goats, and he will put the sheep at his right hand and the goats at the left. Then the king will say to those at his right hand, ‘Come, you that are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world; for I was hungry and you gave me food, I was thirsty and you gave me something to drink, I was a stranger and you welcomed me, 36 I was naked and you gave me clothing, I was sick and you took care of me, I was in prison and you visited me.’

 Then the righteous will answer him, ‘Lord, when was it that we saw you hungry and gave you food, or thirsty and gave you something to drink? And when was it that we saw you a stranger and welcomed you, or naked and gave you clothing? And when was it that we saw you sick or in prison and visited you?’ And the king will answer them, ‘Truly I tell you, just as you did it to one of the least of these who are members of my family, you did it to me.’

 Then he will say to those at his left hand, ‘You that are accursed, depart from me into the eternal fire prepared for the devil and his angels; for I was hungry and you gave me no food, I was thirsty and you gave me nothing to drink, I was a stranger and you did not welcome me, naked and you did not give me clothing, sick and in prison and you did not visit me.’ Then they also will answer, ‘Lord, when was it that we saw you hungry or thirsty or a stranger or naked or sick or in prison, and did not take care of you?’ Then he will answer them, ‘Truly I tell you, just as you did not do it to one of the least of these, you did not do it to me.’ 

And these will go away into eternal punishment, but the righteous into eternal life.”

 Gulp. Reading further in the book about Mother Teresa, I saw that even as she tended souls as they passed into the presence of God, she did not force them to say the “sinner’s prayer.” Rather, she urged them to face God without the weight of unforgiveness and regret upon their souls, to find peace before they died. Her heart of Mother Teresa was first and foremost . . . a mother’s.

Although I had been a Christian all my life, poring over that book on a bumpy Mexican bus I saw something that challenged my most treasured presuppositions about God’s love, seeing its simplest and purest form in the life of a Catholic nun – the last place I ever expected to find it. This was the first lesson I learned from Mother Teresa . . . but it would not be the last. As I worked, I took away seven more important lessons from the life and writings of this great lady, which we will examine more closely in the coming days. I’ve written eight daily posts, to take us from the canonization of Mother Teresa to the fifteenth anniversary of the September 11 attacks.

 Lesson #2: Take Mary with You.

Lesson #3: God Works Miracles When We Make Ourselves Small.

Lesson #4:  God Enjoys the Simplest Prayers

Lesson #5:  Faithful Love Sweetens Life 

Lesson #6: God Transforms Our Pain

Lesson#7: God measures “success” differently than we do.

Lesson #8:  Joy, Like Love, is a Choice.

 

If you are enjoying this series, you might also enjoy my two new books on her life and writings: Advent with Saint Teresa of Calcutta (preorders ship 9/16) and Lent with Saint Teresa of Calcutta, (preorders ship 1/17), both available through Servant Books/Franciscan Media.

[1] Mother Teresa, One Heart Full of Love. Edited by Jose Juis Gonzalez-Balado (Ann Arbor: Servant, 1988), 9.

Do Adoptive Parents Love Like Bio Parents?

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First, let me short-circuit any alarm that this question might raise, perhaps particularly in the minds of newly (or aspiring) adoptive parents. I love my kids – and I do think of them as “my” kids, even on the worst days. I know my husband feels the same way. We would do anything for them, even take an extra turn taking out the trash or cleaning up the dishes when we just can’t summon up the energy to enforce the chore chart. Which, depending on your point of view, makes us loving or lazy parents. Take your pick.

I’ve often thought about this question as I’ve been elbow deep in dinner dishes, and I’ve decided that, just as my feelings for Chris and Sarah (and theirs for me) shift from day to day, it’s very likely that it would have been the same way for a biological child. It might have been easier to connect and bond with a child who shares my DNA, I don’t know. What I DO know is that for the past fourteen years, I’ve tried to act loving even when my feelings didn’t measure up. Because that’s what you do when you truly love someone.

This is a lesson we’ve been trying to teach the kids as well. Like many teenagers, they have conflicting feelings about their place in the family at times. (And at times, those feelings seem to target their sibling, with whom they share a genetic link.)

Now, loving under these circumstances requires a certain kind of stubborn stick-to-it-iveness that is very different from the warm-and-fuzzy devotion that kept us plodding through that sleep-deprived haze of the first year.  It can be a bit like hugging a cactus, actually. Is it the same as what biological parents of teens experience? I don’t know.

Then again, it doesn’t really matter, does it?

When the kid snarls at you (like many teenagers do), or wishes aloud that they didn’t have to live with you (ditto), there can be underlying dynamics that are unique to adoption that make the barbs especially painful, and the instinct to love that much harder to find on a purely human level.

That’s when I’m most grateful that the love comes not in feeling loving, but in the doing.

It’s about being empathetic and not give in to misgivings that “I’m not enough” when a child inexplicably bursts into tears at a scene near the end of “The Good Dinosaur”: “I’m sorry you’re sad. I wonder if this scene of the boy and his family reminded you of your birth mom. Is that it?” (Emphatic nods. Extra cuddles.)

It’s about stifling the eye roll when an outraged child accuses us of expecting them to be “perfect” and refusing to join in the family Rosary one night. “Of course we don’t expect perfection. That’s WHY we pray the Rosary. We all need all the help we can get. Now, go and sit by your father and listen quietly, or join in if you wish.”

It’s about not giving in to resentment when your teen reminds you that she is OUT OF HERE the moment she turns eighteen, “Yes, I know you would rather live with ____.” (I know some bio parents who have had similar conversations.) “In four more years you can make that choice. In the meantime, you need to fold the laundry.”

I’m not sure that it honors the nature of the bond between adoptive parents and their children to insist that we love adopted and bio children “the same.” Can you really love any two people the same way? Isn’t it possible that the family dynamics are colored by the circumstances that brought them together?

Having never had biological children, I can’t say for sure. In any case, I’m not sure that loving any two members of my family “the same” is something to aspire to. I think a better question is: Am I loving my child (bio or adopted) the way he needs me to love him today?

Please, God . . . help me to do just that.

 

 

A Rosary on My GPS: A Catholic Mom on the Road Less Traveled

About a year ago, when I started working at AscensionPress, I thought my blogging days were over . . .  There was simply too much to do, and not enough time to write.

Four months later, as my family life unraveled at the seams, I had an even better reason not to blog: There are some things that are too private, and too painful, to submit to public scrutiny — even in empathetic circles. Now, eight months later, we’re seeing light at the end of the tunnel, and I can envision that one day I’ll be able to find a way to share some of the lessons I’ve learned from this experience. Not yet. But someday.

In the meantime, I’ve come to realize just how much it has meant to have people who have been where we are now come alongside us, reassuring us that we will survive this, too. I’ve had several such kindred spirits cross my path these past eight months, and I will always be grateful God sent them my way.

And so, I’ve decided to begin again, and find ways to reach out to other parents of extraordinary children. I’ve come to appreciate that “Extraordinary Moms” is not quite the right approach (who among us wants to think of ourselves as “extraordinary”?). We love our kids fiercely, passionately, and without reservation — just like every other good parent does.

And so, “A Rosary on My GPS” is my new blog — and I hope you will join me over there. It’s for parents of adopted, fostered, or special-needs children, and I hope to use the “road trip” metaphor to draw from the collective experiences of other smart mothers and fathers, who understand that family life is like a road trip. Sometimes literally — for adoptive parents, that trip can take them to the other side of the world. But always metaphorically.

As parents, we sometimes need direction to help us avoid the potholes and congestion; we need the practical variety (symbolized by the GPS) and the spiritual variety (the rosary beads). And so — voila! — my new blog. I hope you’ll take the time to weigh in on the discussions taking place over there.  If you have a story to share, I’d love to have you guest post. But for now, c’mon over and just say hi. (Extra points if you have a resource or two to share on my blogroll.) You can also contact me privately at heidi.hess.saxton@gmail.com.

Blessings, and thanks,

Heidi

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