“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!

 

Heidi

‘Twas Once a Child

Sometimes when you are in the thick of things, just trying to get through a difficult day, it can help to read a story like this one and know that, even when a disability is for life, there can be happy endings! Thanks so much for sharing, Linda!

Raising 5 Kids With Disabilities and Remaining Sane Blog

cute-house-clipart-cute_red_and_blue_house

My daughter, Marie, has reached adulthood, having graduated from a residential program that had services for both her deafness and her mental health issues. This is the age of worry for any parent, especially one with so many challenges.

When she came to live with us at the age of seven and we were told she was “just deaf”, we could not have properly prepared ourselves for the roller coaster ride of a life she, and we, would have. She was a wild child, blonde hair askew, eyes angry, mouth so hungry she would hoard food under her mattress. She was very angry she had been removed from her mother, (for doing unspeakable acts which shall remain unspoken.) Despite providing her with a healthy, well cared for childhood, Marie’s disposition had been preformed. She would lie, steal, beg strangers for money, and reject all of our efforts to parent her…

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Waiting… and Fuming

Sarah 2005Have you ever wondered what a speaker does in the hour or so before she gives her presentation? I don’t know about Pat Gohn or Lisa Hendey or Kelly Wahlquist . . . but I can tell you what I was doing last night.

Fuming. Because I couldn’t find a lipstick. Real spiritual, right?

I wear makeup about 12 times a year, usually a swipe of mascara and a dab of lipstick. My husband thinks I’m a natural beauty, so why mess with it? But like any gal, when it’s time to stand and deliver, I like to get a bit gussied up.

Only this time, my child-who-shall-be-nameless had swiped all THREE of my lipsticks along with a few other items. And frankly, it was the last boundary-related straw that week. I’ll draw a veil of privacy over the discussion that ensued (for both our sakes), but suffice it to say that I arrived at church feeling rather depleted. What made me think that I had anything worth sharing with these women, when I could barely get myself to the church without strangling my daughter?

I was happy to see another writer friend, Jeannie Ewing, in the audience. Several other special-needs moms as well. And as I shared my Lipstick Story with them, I heard warm and appreciative laughter. I guess I wasn’t the only mom in the room who ever had to put her makeup under lock and key.

Later, one of the women took me aside and told me the story of her struggles with her own teenager. She spoke of her anxiety in waiting, in wondering what the future would look like for her daughter. This, I understood. All of it. And in that moment, I was reminded of something: That being a speaker or teacher — or a parent — is not about handing out dazzling perfection from a pedestal on high. It’s about bearing witness to the mercy of God in my own life, despite (and sometimes because of) its imperfections, and helping others to see that same Providence at work in theirs.

Where is God calling you to witness?

Are you waiting and fuming, or waiting and worrying, this Advent? “Let nothing trouble you, let nothing frighten you,” said St. Teresa of Avila. “All things pass away, but God never changes. Patience obtains all things, and those who possess God want for nothing. God alone suffices.”

It’s not too late to pick up a copy ofAdvent with Saint Teresa of Calcutta on Franciscan Media or Amazon.com.  Happy Advent!

31 Days of De-Stressed Living, Day 28: X-amine Priorities Through a Child’s Eyes

cuddle“Mommy, will you play with me?”

“Mommy, can you rub-tickle my arm?”

“Mommy, I wanna snuggle…”

I imagined that by the time my children reached middle school, they would stop seeking my company quite so actively. When I was in seventh grade, I used to climb out on the roof outside my bedroom window to escape my mother. Outside, with the biggest book I could find — usually a Reader’s Digest Condensed. My parents had a whole shelf full of the things. I’d start at one end, and work my way to the other side.

Looking back, I probably should have asked my mom to take me to the library. We didn’t have a television, and only the Christian radio station was allowed. So books were my escape.

For reasons I don’t entirely understand, my kids don’t like to read. I’ve tried all the usual things: reading aloud, and offering a variety of books, and getting them books on tape. No dice. And I’m not entirely sure why.

Is it possible that a love of reading is genetic, rather than environmental?

No, when my kids are stressed out, they want … Contact. Close physical proximity for as long as I will let them. Like junkies looking for a fix, they sidle up beside me, and nudge my arm until I lift it over their shoulders. Sarah bounces against my “air bags” (as she calls them) contentedly, while Chris simply leans against my shoulder, pulling the closest soft blanket over us all. Even in church (then it’s without the blanket), they lean in purposefully.

Sometimes I enjoy it. I mean, what mom wouldn’t relish the feeling of being their child’s whole world? Other times, it can get a little claustrophobic. Like they don’t stop until they’ve drained the last drop of attention. Still others, I wonder if I’m feeding a monster, if I would be doing them a kindness by weaning them from the constant need to touch, clutch, and snuggle.

But then … I have to examine things from their eyes. All the change, all the fear, all the loss, all the feelings … it has to go somewhere. it has to diffuse somehow. And mom is the rock that makes them roll.

And when my life is stressed, from all the change, and the fear, and the loss, and the feelings that threaten to swallow me whole, sometimes it helps to find a place to cuddle, snuggle underneath a soft, fleecy blanket.

They may not be readers … but they’re pretty smart.

31 Days of De-Stressed Living, Day 16: Live and Let Live

monster momOver at “4 Moms,” Beth-Anne Jones writes about “discretionary burdens,” the self-imposed expectations we put on ourselves that result in our running a round the house screeching like a fishwife, eyes bugged out and children running scared. “All right, you sneaky little rug rats. WHO ate the M&Ms I left on the counter to make the eyes on the triple-decker reindeer cookies I was making for your class party tomorrow?!??!”

Sure, I could have whipped out the Pillsbury version in a snap, but Noooooo. I have to do my own personal version of “Cupcake Wars.” But with seasonal cookies. (And the fact that I don’t have a picture here should tell you something about how they turned out.)gingerbread-village

Today’s de-stress tip acknowledges that there are two kinds of stress: The kind we receive from the universe (“MOM! I need 27 cupcakes for our class party tomorrow.”), and the kind we impose on ourselves and others. (“Oh, my goodness. I have to come up with something that will top the gingerbread village I made for Sarah’s teacher last year, or this teacher will think I’m a slacker.”)

No, she won’t. Get out the Pillsbury dough, and she’ll be thankful she won’t have to deal with the Supersized sugar buzz like last year’s teacher.

Recently, thanks to Christopher’s current teacher, it also struck me that I need to lighten up on the expectations I put on my kids sometimes, too. For example, when your eighth-grader curls up in the fetal position when you log on to “Study Island,” that might be a sign that he needs to go outside and romp with the dog for a few minutes instead of logging on yet another hour of math fact fun. Yes, he needs to catch up to his peers. But does he have to do it today? Of course not.

Live . . . and let live. Discipline, tempered with mercy. For yourself. For your kids. For life.

What “discretionary burdens” give you trouble?

Fun Fridays: Road Trip, Anyone?

Fun Fridays

As we load up the van to spend Christmas with Craig’s mom, it reminded me of a long-distance road trip I took with Sarah Reinhard and our kids a few years ago, to attend the Catholic New Media Conference in Atlanta. Do you need a “Road Trip Survival Kit” to get you through the next few weeks?

If you’ve ever taken a road trip with a van full of kids,  you know that there are certain items that you never, ever leave behind. Not if you expect to make it to your destination without one or more children strapped to the roof. Our “Road Trip Survival Kit” has a cooler containing . . .

  • Frozen juice pouches (to keep the kids from slurping them all in the first five miles),
  • Diet Coke (to keep YOU alert and headache-free),
  • PB&J (to toss in the back seat every time a kid spots a McDonalds and whines for sustenance),
  • Frozen container full of chili or other dinner you can zap in the hotel microwave (don’t forget the corn chips for scooping), and
  • Two bottles of Mike’s Hard Lemonade (for after the kids go to bed).

In addition to the cooler, bag of swim gear (one adult takes the kids to the pool while the other unpacks the room and gets dinner started), and Mystery Bag (full of treats from the Dollar Store, to toss in the back seat at regular intervals to keep the chaos down to a dull roar), there are two more items in my “Travelin’ Mom Roadtrip Kit”: a rosary . . . and a GPS. They stay on my dashboard, always in arm’s reach. After all, a girl never knows when she might need a little prompting to head in the right direction.

It’s been ten years since my husband and I foster-adopted our kids, both of whom have special needs. And in the past eight months, we’ve had to face some extraordinary challenges that have resulted in a kind of mental U-Turn. More and more, I find myself thinking about all those things that I wish someone had thought to tell me ten years ago. Perhaps you have been in the trenches a while, and feel the same way.

If that’s the case, I invite you to join me on this road trip.  Rosary and GPS in hand, let’s explore that “road less traveled” . . . together.

What’s the most indispensable component of YOUR “Road Trip Kit”?

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.

The Things We Do for Love: “Chopped”!

"Chopped" All StarsWhen you’ve been married for more than a decade, it’s easy to fall into a bit of a routine: He nods off around 9 o’clock while I “channel surf” until I land on a decent movie or one of my cooking shows. My current favorite is “Chopped.”

Each week four professional cooks vie for $10,000 prize money by creating culinary magic from a basket full of unlikely ingredients, creating first an appetizer (from grape jelly beans, conch, purple potatoes and kale), main dish (tofu, rabbit tenderloin, raddicchio, and Sambucca), and dessert (pumpernicle, lichi fruit, quail eggs, and corn nuts). Thirty minutes, starting NOW.

In each round, one chef gets “chopped.” A messy plate, unseasoned vegetable, or (gasp) forgotten ingredient — a regular occurrance at our house, I might add — is enough to send the ‘choppee’ on the walk of shame to those glass doors leading out of the studio.

“What is it ABOUT that show?” My husband usually stirs awake about 10:50, just as the last contestant’s crestfallen visage gets the requisite closeup as he (or, more often, she) recognizes the rejected dish. A fair question, that. Heaven knows I’m a utilitarian cook most days. But there is something about it that resonates with me. I can just see it: Getting trussed in a gown, forced to turn an armful of strange and not a little intimidating raw materials into something approaching a civilized dining experience, on pain of facing a chorus of alternately disapproving and appreciative “experts” whose opinion can make or break your future.

Yeah. A LOT like parenting . . . foster and special needs parenting especially. Alternately exhausting and exhilarating, satisfying and alarming. Sometimes you have to make do with a Cuisinart when what you really need is the sausage grinder, or the broiler when what you really need is the brulee torch. But somehow, inexplicably, joyfully, wondrously . . . it all comes together in the end.

And in the end, you get something a lot better than ten thousand dollars: You get to be “Mom” to a kid that some das you can’t but love so fiercely, it takes your  breath away. And on those other days . . . well, on THOSE days you hold on and just pray that bond between you holds tight. ’cause love never says “chopped.”

OK, all you secret chefs out there: If you could created a “Chopped basket” to challenge your favorite cook, what would go in YOUR basket?

Photo Credit:  “Chopped” airs Tuesdays at 10 p.m.

Not-Quite-Silent Motherhood: A Miracle in Our Midst

One of my favorite ways to engage the Gospel is to imagine that I am a peripheral character in the story. In this week’s Gospel, for example,  we encounter a man who is both deaf and has a speech impediment, who is brought to Jesus for healing. We read:

He [Jesus] took him off by himself away from the crowd.
He put his finger into the man’s ears
and, spitting, touched his tongue;
then he looked up to heaven and groaned, and said to him,
Ephphatha!”– that is, “Be opened!” —
And immediately the man’s ears were opened,
his speech impediment was removed,
and he spoke plainly.

Listening to the story, I imagined what it would have been like to be this man’s mother. Imagine raising a child who could not hear her–but whose attempts to engage the world  were loud, unintelligible . . . and never-ending. Imagine what it would be like when that child grew into manhood. As his mother, she would have tended to his needs long beyond the time most children need their mothers. Well into the time when most children begin to contemplate tending to their elderly parents’ needs.

What must it have been like for her, to have been suddenly released from her role of caregiver? Did she feel a rush of relief? Unmitigated joy? Or was just a part of her a little worried about what her life was going to be like, now that her role (and her identity) was no longer so neatly defined. What were her son’s first words to her, once could express all the thoughts that had been bottled up in his heart?

All the healing miracles of Jesus were, strictly speaking, not primarily ordered toward the restoration of the human body. The healings were genuine, of course . . . and yet, the primary purpose of each healing was to point us toward something eternal. Often it was to reveal his divine power and authority toward a particular group of people, to liberate their bodies as a means to direct their attention toward their need for inner healing. This was as true for those who brought the man to Jesus as it was for the man himself.

The thing is, each time we approach Jesus, whether in his Word or in his eucharistic presence, we are reminded of that need for healing again. And I can tell you this with certainty: Nothing in forty-plus decades of human existence has reminded me of just how much I need that healing like parenting. Each fault and failing is magnified, until there is nothing to do but cast myself on the mercy of God, in full view of anyone who cares to watch.

As I thought about this, there in church, a loud moan rang out from the back of the sanctuary. A teenager, developmentally disabled and possibly deaf, was quickly led by her mother out of the church. Minutes later, they tried to slip back into the service . . . and quickly had to leave again when another eruption occurred. There was no miracle for this family, no possible way to remain silent and hidden in the pew. As a mom who has had to leave quickly from her share of services, I wanted to hug both of them and say, “Thank you for being here today. Your presence was a gift — you helped me to enter in to the story with all my senses, and see in a fresh way the miracle of Christ.”

NOTE: Would you like to learn more about lectio divine, the ancient spiritual practice of putting yourself in the Gospel scene in order to meditate on the story? Ascension Press recently released Walking Toward Eternity (and is in the process of developing a new faith formation program, Oremus), based on the ancient Catholic tradition of lectio divina. If you enjoyed Jeff Cavin’s The Bible Timeline or Quick Journey studies, check this one out!

Photo Credit: Original source unknown, entitled “Ephphatha” and linked from “Jonelliff.posterous.com” Ephphatha