Resilience as a Way of Life

If living with disability teaches a family anything, it teaches us resilience. We can handle more than we think we can.

 

Photo by Healingdream

 

I‘ve been thinking a lot about family resilience lately. Maybe that’s because our family is getting a chance to flex those muscles of resiliency hard. It was good catharsis for me to write down all the things we’re dealing with right now, but I erased them because my words sounded whiney. The point is, we’re being pulled from many sides.

All of us are being pulled. Much of the time.

There is no point in letting it get us down. We are stronger than we think.

This week I took part in a support group for parents of kids suffering with a particular illness. It was lovely to meet other parents and hear their stories. We were all at different places in our journeys, but the current that carried the words around our table was one of resilience. These families tackled the challenges and kept their eyes fixed on the goal line. That’s something parents learn to do, and the more practice we have at doing this, the more familiar and comfortable it becomes.

I won’t say that it becomes easier, because that isn’t always true. Sometimes resilience is a difficult response that takes focused effort. But with practice, it comes more naturally.

I hear similar stories of stress and resilient responses in my disabilities circles. Life dishes out messy circumstances sometimes, ones that can get us down. It’s okay to cry for a time, especially early in a diagnosis when our hurt is raw, but then we need to pull on our rubber boots and wade through the muck. And we do, one step right after another. Eventually, we get out of the sloppy mud.

There is a lot we can do to draw strength during stressful times.

·         We pray. Hard. Faith often grows when we are stressed.

·         We make time to connect with our spouses. It might just be brushing our teeth together as we switch shifts, but we savor that time.

·         We take solace in our routine chores. After all, everyone needs clean clothes even if one of the kids is in the hospital. And the goats still need to be fed…just ask them.

·         We help someone else going through a rough time. The strength you can draw from this one never fails to amaze me, but I see it often. Parents who are working hard to keep their own brood in a sane place will offer encouragement or advice. That very act gives them energy to keep going. It is true for me.

·         We let go of the optional. We may have to post to our blogs less often (do you feel an apology hidden there?). We may have to back out of the carpool for a time or let someone else teach Sunday School.

·         Pet peeves are optional. Learn to let them go or see them differently. Kitty prints in the dust on the mantel normally send me to grab the duster. Right now, during a time that demands resilience, I look at them as evidence that the cat is alive. This makes them a good sign, right?

·         If you can’t set aside time to enjoy your hobbies (do I hear you belly laughing about now?), see if there is some way to build them into your temporary routine. I love to tat (that Victorian art of making lace with shuttles) and find it’s something I can do in the car while my husband drives us to the hospital. Well, that was before I injured my hand, but I digress… Above all, try to find things within your busyness that make you smile. Or even laugh.

·         We ask for help. If anyone knows how to do this, please share. I’m lousy at this one, but have heard it helps.

You are an expert at resilience. Would you share with us what helps you stay strong when the pressure is on?

Life at the Speed of Mercer

True, it’s been quiet here at Adapting Creatively. But there is so much going on behind the scenes, there simply hasn’t been time to make much blog noise.

Two and half weeks ago, my daughter’s longtime dream of having her own service dog came rollicking into her life, tongue lolling, with oversized German Shepherd puppy ears and floppy feet and a little pink puppy belly. She named him “Mercer” (very fitting, as the Mercer family was instrumental in founding mearby Seattle) and he is already a blessing to her.

For being only four months old and having a LONG way to go in his training, Mercer’s basic personality is very calm and gentle. When he is exercising self-control, he is amazing. He is learning his manners quickly and is very, very well-behaved at the store.

He is far from perfect, though. He has fantasies of chasing the cat in the house, which meanie-mom and meanie-dad continuously interrupt. He is right in the heat of teething, with so much painful activity in his gums that everything—literally, everything—gets sampled as a potential soothing chew for that sore mouth.

Mercer’s favorite person is our daughter, A. He hangs out under her wheelchair or plays ever-so-gently with his toys in her lap. He helps deliver and collect her from the bus each day. A feeds him and gives him treats and helps reinforce his obedience training with her mid-tech voice output device (an ancient Cheap Talk 8 with levels...which she has to operate hand-over-hand).

 

The therapeutic effect on A from having her own dog has been nothing short of a miracle. She had been unable to coordinate her steps when walking, but her motivation to show him off to Grandma on Mother’s Day prompted her to walk with only assistance for balance for about 100 feet from the car into Grandma’s house! A had also pretty much given up on balancing when tailor sitting on the floor, as her severe myoclonus jolts her backwards. But if there is a possibility Mercer might come lay his head in her lap, she manages now to tailor sit for up to 30 minutes at a go. It has been about a year since we have seen this level of control. What a joy!

To top it off, Mercer was able to interrupt a myoclonic episode a few days ago with nose nudges and “kisses.” We praised him wildly for this wonderful feat and hope to shape it into a dependable service to our daughter.

It will be several years before Mercer is fully trained to do all the service tasks we’d like him to do to increase our daughter’s independence at home and in the community. At times it is hard to envision him performing these tasks, but it is critical that we start shaping these behaviors even now. It takes so much vision! Thank goodness we have wonderful service dog trainers working with our family to make this happen.

And, of course, it all takes time. Please understand if I'm a bit pre-occupied during these puppy days. They are a bit intense, but the pay off at the end promises to be enormous!

How Far do Encouraging Words Go?

We parents are vulnerable when it comes to our precious kids. It’s hard for us to imagine how other people can overlook their courage and beauty. So when folks say insensitive things, even if they are meant with the kindest of intentions, we rant about their words.

In fact, we special needs parents have a rather unflattering habit of complaining about the thoughtless things people say regarding our kids. There. I said it. And I’ve done my fair share of griping.

I owe the world an apology. I’m sorry for my reckless rants over words that weren’t the most sensitive.

I’d like to shift the discussion onto the ENCOURAGING things people say.

Sure, those gems may come along less often than the thoughtless remarks. But if we look at why they encourage us, perhaps we can become better encouragers ourselves.

My most vulnerable days were when we received the news of our daughter’s diagnosis. Family and friends honestly didn’t know how to respond. But then, I had no idea what they could have said that would have made me feel better.

At the time, everything said to us was intended to encourage, and some of the comments were helpful. Others were less so, but I tried very hard to look past these abrasive comments to the intent behind them. Some days it was easier than others to do this.

But one neighbor gave me the gift of a most excellent response. Over fourteen years later, her healing words still encourage me. I think back to that winter afternoon and it makes me warm all over again.

I had been tidying up picture books from the living room after my daughter had strewn them all over the floor. Quiet tears slid down my cheeks because the new explanation of her odd behavior tied it to issues we couldn’t control. Her need to toss all things vertical into a horizontal position stemmed from sensory issues related to her diagnosis of Rett syndrome. Not that every child with RTT is intolerate of horizontal lines, but they drove her nuts back then. On that afternoon, it felt like our whole world was vertical and we were trying to figure out how to adapt it for Little Miss Horizontal.

There came a gentle knock at the door and I straightened myself up as best I could before opening the door. On the porch stood our neighbor. Our baby girls were a few months apart in age; we were both older professional women who had chosen to stay home to raise these babies. We got together for play dates a few times, but conversation became awkward over time as her little one raced ahead in her development and my daughter’s skills took a backward tumble.

From my tear-stained face, it was obvious something was upsetting me. Our neighbor asked what was wrong and I told her that our daughter had just been diagnosed with Rett syndrome. Her reaction was selfless and genuine and more perfect than she could know.

“I’m sorry,” she said. “I’ve never heard of that. Does it make her hurt?”

The focus, completely on my daughter and her level of comfort, was a fresh perspective that rechanneled my own frightened thinking.

*It wasn’t about me. It was about my little girl.

I had an easy enough time feeling sorry for myself, for my grief and lost dreams and the overwhelming thought of caregiving for the rest of my life. Having someone step in and remind me who the diagnosis was about was a very good and gentle correction.

*It wasn’t about the future, but about here and now.

I was so wrapped up in how we were going to handle the big picture that I lost sight of today.

So many people jumped right to questions about our daughter’s future...her physical and mental potential, her living situation, and, dare I say, her lifespan. Families, especially, tend to think this way, perhaps because they are involved in our lives for the long haul.

It’s kind of overwhelming to think about such a huge picture as a new parent.  To be asked these questions is to be reminded of how of just how overwhelmed we are.

*It didn’t pretend to understand the unknown.

My husband and I had never heard of Rett syndrome before our little girl came along; I’d wager than the VAST majority of the population hasn’t either. When this neighbor honestly admitted she didn’t know about it, I felt less alone in my ignorance.

It doesn’t help parents to pretend we know about something we have little knowledge of. Somehow, faking knowledge trivializes the conversation. It adds an element of insincerity. And believe me, parents at this vulnerable stage need sincerity...desperately.

*It was about my child’s comfort.

The fact that this lady expressed concern for my daughter’s pain level was probably the single most comforting thing she could have said.

As a mother, I want my children to live free from pain. My neighbor’s concern identified with that universal, deep-seated anguish parents have when our children hurt.

After all, there is a reason that hunger relief agencies show not just the haunting faces of starving children in their funding advertisements. They are sure to include the face of one or two mothers agonizing over the pain their beloved children must endure. We may not be able to identify with severe starvation, but we most certainly identify with the desperation of these mothers.

That one little question drew my neighbor alongside me in this new and terrifying role, and I suddenly felt less alone.

Yet she didn’t ask it for my benefit. She was genuinely concerned for my daughter. And that shifted my perspective around so I was free to focus on my daughter as well.

You know, my answer was that no, Rett syndrome itself doesn’t cause pain. And that was a HUGE positive that I had overlooked (mind you, there are a number of resulting conditions that can cause tremendous pain, but we weren’t dealing with these yet). Right then, I felt immensely blessed to be able to give that answer.

Admittedly, it’s difficult to know the right words to say when we learn that a friend’s child has been diagnosed with a disability or been seriously injured. But focusing our encouragement on the child and the child’s comfort can go a long, long way in bringing comfort to the parents.

This kind neighbor will never know how great an impact those few words made. Time and time again they have brought me support and new focus. They have helped me consider what I might say...or not, in the event a child is obviously in great pain...and I hope that those words have been soothing to other families as well.

What encouragements have people offered you that you found helpful? What can we learn from these statements? Please let us know, so we can become better encouragers ourselves.

Making today count...

It seems like I’ve been bombarded lately by the same message:  make today count with your children.

Over at 5 Minutes for Special Needs, Suzanne Perryman has a thought-provoking message about loving your children as though today wastheir last one on earth. We have no guarantees about tomorrow. When our kids have medical issues, this point is especially true.

Lynn Cowell, contributing author at Proverbs 31 Ministries, echoed the same message about being genuinelypresent for our children  before they are grown and gone from home. Our kids have only one childhood; if we are going to be part of it, we need to do that while it is here.

Our family has experienced some harrowing moments over the past few months that underscore this appreciation for time, for making the very most out of the precious minutes we share with our children.

Our daughter’s myoclonic jerking has taken on a challenging new twist over the past two months that has caused us to step back and appreciate our time in a new way. It now consumes all her waking moments. Her whole body thrashes with rhythmic pulses that she cannot control. It’s exhausting, debilitating, and progressing with frightening speed. The movements are so unique and unfamiliar to her doctors that they wanted her tested to rule out brain tumors or deep-brain seizures. We are grateful that the tests came back clear, but their potentially serious—even fatal—outcomes have underscored the importance of treasuring the time we have with her.

The week after hearing the relieving news about our daughter’s brain scans, I was called into my gastroenterologist’s office to discuss biopsy results from a recent colonoscopy. Now a doctor doesn’t usually bring you to his office to congratulate you for a happy colon, so I knew the news wasn’t going to be happy-skippy. Those few days between the call to come in and the arrival of the actual appointment left time to mull over the sobering thought that none of us are guaranteed a 60^th birthday nor even good health. While I’m not looking forward to repeating the colonoscopy in a year to make sure the pre-cancerous polyp is completely gone, I’m thrilled not to be receiving a diagnosis of cancer.

And I find myself doing a bit more of what both Suzanne and Lynn remind us...

...focus less on the housework and more on the children

...turn off the computer/phone/tv and turn full attention onto listening to our kids

I’m doing more to include my kids, whether it’s an invitation to join me on errands or in the kitchen to get dinner ready or just sit close together under a blanket when the family is watching tv.

Instead of racing to “get through” personal care and hygiene moments, I am trying to turn them into opportunities to connect and communicate. Sure, it takes longer. And realistically, I can’t do it every time. But when I can it is oh-so-worthwhile.

This savoring of moments with our kids is wonderfully selfish as we benefit from the interactions and memories shared with them. AND it is an act of giving, in that our children receive love and respect and the knowledge that they are treasured. Is there anything better than that kind of two-way benefit?

What do you do to treasure these days you have with your children? Treasuring isn't limited just to parents...teachers, Sunday school teachers, 4-H leaders, therapists, doctors...anyone who impacts the lives of kids has the opportunity to hold these precious moments. How do you savor days with a child?

Gratitude

I’ve been sneaking in quick peeks at blog posts this week, savoring all the wonderful reasons people are thankful. I love that about Thanksgiving time, that it causes us to reflect on our blessings.

I am awed and uplifted by parents who struggle daily with some tremendous challenges that their children’s disabilities bring. The ability of these brave parents to find joy and gratitude in their difficult situations is nothing short of inspiring—even to one who lives a similar life.

When I read their lists, I am moved to think of my own reasons to be grateful in the midst of challenge.

And that does my heart good!

I am surrounded, both in “real life” and cyber-wise, by families whose lots in life are ones I can’t imagine living. And yet these families can dig through their difficulties and find reasons to be grateful. Some of you read here, and I love what you share.

A person who can look past the medical issues, past the behaviors, past the limits...to see the beauty and courage and strength and gracious soul of their child...is surely one who has great wealth. No wonder you have thankful hearts!

As we in the United States come into this season of gratitude and appreciation, I encourage you to find the good in your situation. We who have food on our tables (however plain) or roofs over our heads (even if the gutters need repair) or families to laugh with together (warts and all)...we are truly blessed.

Now, I know it can be hard at times to even see our blessings, let alone feel grateful. I can fully empathize with families who are reeling from the unexpected shock of a painful diagnosis or a downturn in their child’s condition. I can relate to those momentary setbacks we all experience where reality serves as a magnifying glass through which we see the blemishes in our situation.

If you are having trouble finding your blessings, please, for the sake of your children, look for the little things to be thankful over. Your kids deserve to know that life can be good. They need to know that you are grateful for them.

Have a lovely Thanksgiving, and please give your children a hug and let them know how thankful you are that they are in your life!

What makes for quality respite time?

Ever feel the need for a break from your caregiving duties? We all do, even if for just a fleeting moment.

We call that respite.

 

The thing is, we each need to define and honor what respite means to us personally. And those around us need to honor that as well.

Take my daughter’s State case manager. He means well, truly. But his definition of “respite” involves sending our daughter off to a week-long sleepaway camp. “Think of all the time you’ll have for yourself,” he says.

What he doesn’t see is the three solid days prior to camp that it takes me to set out and label a week’s worth of clothing, medication, food, and other supplies.

He doesn’t factor in that camp is a half day’s drive away, nor that I must lug mountains of bulging baggage down to the rec hall once we arrive.

He doesn’t see my worry the entire time my daughter is gone. Worry about seizures, falls, misinterpretation of her communication, missed hydration...the list is endless. Even when I am able to surrender my worries, I can’t stop missing her.

He doesn’t see the illness she brings home every year. Last year, she picked up pertussis and shared it with me. I was sick a full six weeks following her return, sicker than I’ve been since the time I had mono in high school. This summer, she brought home strep and shared with the entire family.

You start adding up the half-week of preparations, the week of worry, the 3-6 weeks post-camp illnesses, and it doesn’t look a whole lot like respite anymore. Sure, it’s great fun for her. But respite for me? Not hardly.

Compare that to my dear husband, who has learned to accept the fact that I really, really like to be around my daughter. After all, she’s a truly likeable kid and I enjoy her presence. Add to that the fact that I can relax better when she is near.  Her health issues are ever-present and need to be handled carefully so they don’t blow up into full emergencies. I am not comfortable leaving her in the hands of anyone who doesn’t know her inside and out.

He knows I’d be completely miserable if he whisked me off to some tropical paradise so long as my daughter’s health is what it is right now. He’s a clever man, that husband of mine! (Sorry ladies, he's taken).

My husband planned the perfect “respite” weekend for my birthday last month. Instead of taking me off away from the kids, we all went away on a splendid weekend getaway. We girls schemed and shopped for our fancy evening wear, which was admittedly a whole lot more fun than setting out a weekend’s worth of supplies for a caregiver. We splurged on two adjoining rooms at the hotel. This gave my husband and me our privacy but the girls were still close by so I didn’t have to wonder what health issues may or may not be happening. For me, it was the perfect respite scenario.

That indulgent kind of weekend isn’t something we can afford to do outside of Milestone Birthdays (I’m not letting on which one it was...). To me, run-of-the-mill respite time is most restful if I can spend some time at home doing things I love that I wouldn’t be able to do if I were attending to my daughter’s needs.

Nothing is more restful to me than holing up for an afternoon in my sewing room, uninterrupted, listening to the laughter of my daughter and her wonderful caregiver as they enjoy a game or a movie together. Or I might go lie out in the pasture with a goat curled up under each arm and watch the treetops dance in the breeze.

Respite to me is getting to let go of the duty for a time. It isn’t escaping the girl or even escaping her health issues. In fact, I don’t want to be far from them. I just need a chance to breathe deeply sometimes, to immerse myself in something that isn’t related to care.

What about you? What do you do for respite? What would you do in your wild imaginings (keeping in mind this is a G-rated show)?

 (photo courtesy virtualphotographystudio at Flickr Creative Commons)

Grief from a New Angle

Grief is a slippery creature. About the time you think you have it tamed, it shows you a new side of itself.

When my daughter received her diagnosis of Rett syndrome nearly 14 years ago, I grieved. I grieved for what she would never have. I grieved for the “normal” experiences I had anticipated in raising her.

Through much wrestling and praying and struggling, I worked through my own grief. It took several years.

It isn’t that I actually like Rett syndrome, and would never wish it on the vilest enemy, but I have come to accept both it and our new normal. What began seeming like a curse has brought us tremendous blessing.

(Once in a l-o-n-g while though, I must admit, I do have one of those “I hate Rett syndrome” tantrums when no one is looking).

This past week, however, brought a new perspective to grief.

Friday, grief hit my daughter.

And I’m not sure how to handle that.

She was sobbing when I went into her bedroom to get her up for the day. It wasn’t a cry of physical pain. It was tears-streaming, pouty-lipped, breath-catching, my-heart-is-breaking sobs. She seldom cries like that.

I did the best I could using words on a white board and yes/no questions to find out what was bothering her, and she quickly, deliberately answered my questions with her eyes. It boiled down to her sadness and frustration over all the things Rett syndrome has taken away.

This was a very complicated discussion for me, because I didn’t want to plant unhappy ideas that didn’t already exist, giving her even more to be upset about. But we muddled our way through and she was heroic in her strength to respond and press ahead.

I am so proud of that girl!

Of course, it was all I could do to fight back tears of my own, I felt so badly for her. In the end, I gave in and cried right along with her.

We shared a good cry, a long snuggle, some soul-baring prayer, and I let her stay home from school so we could have a mother-daughter day. If she needed to talk some more, we would have that luxury. She was probably too distraught to have had a productive day of learning at school anyway.

She wanted to curl up on the couch together and watch “Ugly Betty” reruns. It was a good distraction and the day ended much more cheerfully than it began. She hasn’t seemed grieved  since.

We all need a chance to vent our sadness and frustrations sometimes. I feel so blessed to be able to give her that opportunity.

Yet it does leave me with some questions.

Before, in processing my grief, it was my own grief. I owned it. It was a selfish, look-how-this-syndrome-twisted-our-lives grief. Sure, I felt sad over the losses our daughter had suffered and the experiences she would never enjoy. But even that was my grief over her missing out.

This experience awakened grief in a new way.

I got to see what it is for her to ache over her own losses. It had nothing to do with me at all.

Now what?

Is it possible to work through what I do not own?

Unfortunately, no.

This is grief I cannot process for her; it’s something she has to process herself. Yet she has no means to express words, no way to talk about the things bothering her most.

The things I did to work through grief--talking with my husband and family and friends and eventually a counselor, writing out my unlovely thoughts, even shouting at God (it wasn't pretty, sorry)--are not options for her.

Somehow, she is going to have to work through this on her own.

Not that she's completely on her own; the Lord is with her. But still, this is her own grief to process through.

So tell me...

How do I help her?

The helplessness is familiar; my husband and I have been helpless in “kissing the boo-boo” of her syndrome and “making it go away.” Only after we surrender its suffocating weight can it be lifted so we can breathe again.

Truly, I am at a loss. This is uncharted territory for me.

Have any of you helped your kids process their grief when it hit them? How did you do that?

Do you know of any recommended reading? I’d appreciate the name of a helpful book right about now...

7 Ways to Deal with Daily Time Bandits

Have you ever heard the adage “We all have the same 24 hours in a day...it’s all in how you choose to use them”?

As a parent of a child with physical or cognitive disabilities, this can feel like a slap in the face. We don’t necessarily have a choice about how we are going to use our hours. We accommodate our children’s needs for physical care. We give our children the time they need to process and carry out instructions. These things cannot be hurried.

Last week a friend and I were commiserating about how time-consuming physical disabilities are. Sure, there are the big time-gobblers that come with the territory, like IEP meetings and endless doctor appointments.

But even more than that, there are day-to-day time thieves related to disabilities that steal away tremendous minutes. Every day. Day after day. Month after month. Year after year.

Moms of able-bodied children can direct their kids to complete their own care. Kids may not be  definitely are not quick when they are toddlers but there is the hope that things will speed up as the kids mature.

This isn't necessarily true for kids with disabilities who will grow to become adults with disabilities.

Let’s look at just one example. When the mom down the street needs to run errands, she can instruct her kids to grab their shoes and coats and meet her at the car.

Moms of kids with severely physically challenged children go through an entirely different process:

·        Check and replenish bag of travel supplies (5 minutes)

·        Put on AFO’s and shoes (5 – 10 minutes depending on the style)

·        Put on child’s coat (2 minutes)

·        Load child into wheelchair and walk outside (2-3 minutes)

·        Unload ramp or lift-up seat, secure child or wheelchair, reload ramp or lift-up seat (5 – 7 minutes)

·        Load wheelchair, if using lift-up seat (1-2 minutes depending on how many parts you have to remove)

·        Stop to recover breath if said wheelchair is over 30 pounds. Most standard wheelchairs are. Dust road grime from the wheelchair tires off your clothing (1 minute)

·        Go back to the house for your own coat and purse, DOUBLE-CHECK THAT YOU HAVE YOUR KEYS (2 minutes...infinitely longer if you have forgotten your keys)

Hmmm. It takes 20 – 30 minutes just to load up the car. This assumes the child doesn’t need to return inside to use the toilet. This happens.

And that’s just loading the car. What about dressing? Bathing? Toileting? Eating? Homework? The list goes on, and those extra 10-, 20-, 30-minutes add up fast.

How do we respond to this?

1. We commiserate with one another. It feels so validating to talk with other parents facing the same challenge of how to fit everything into the day. Our 24-hours are not our own. You and I are not the only people who truly don’t have discretion over how we will spend all our hours. Sometimes it’s nice to know you aren’t paddling the boat alone, isn’t it?

2. We streamline whenever possible. It’s helpful to keep a well-stocked backpack in the car with all the items you might need away from home. Our family keeps a change of clothes, an extra jacket, extra toileting supplies, spare g-tube extensions and an extra bolus syringe in the car for emergencies. To remind myself that something needs to be restocked, I toss it up on the passenger floor so I’ll see it when we’re unloading.

How else can you streamline your day? Can you organize your feeding or toileting supplies in the room to reduce backtracking and unnecessary steps? Can you purchase frequently needed supplies in bulk? Can you set out clothes and school items the night before?

3. We give ourselves extra leeway. Our families don’t operate on the usual timetable, so it does no good to try to squeeze into typical standards. While our destination may only be 10 minutes away, accept the need to start loading the car 30 minutes before we need to be there. Don’t fight it; go with the flow.

4. We are gentle on ourselves. We can’t get everything done in a day that needs to be done. But if, at the end of the day, our families tuck into bed safe, fed, clean and happy, we have accomplished something amazing. Be proud of your accomplishment. Do not allow the things left undone to steal your joy.

5. We MAKE time to do things that renew us. This does not happen automatically. No one is going to carve 15 minutes out of your day for you to do the things that refresh you. YOU must do this for yourself. You need this. Force yourself to find a way to grab a few minutes with something you love, whether it is time with a good book, time in your sewing room, time to relax with your spouse or in a bubble bath, time to train your goats...

There’s a corollary here that might help you locate a few minutes. It’s good to know everything you can about your child’s disability. Just be aware that you can lose yourself in researching the condition and its treatments (just ask how I know this to be true), especially online. It can be very helpful and quite fascinating, but hours can fly by without you realizing. Set a timer.

And when that timer goes off, take those 15 minutes of personal renewal. Please. You will feel so much better for it!

6. We learn to prioritize our commitments. We have to make what little discretionary time we have in our days count. Count Big. Count Big for the things we are personally vested in. Save the precious moments you do have left for the things that matter terribly to you.

I’ve heard moaning from several places about the noticeable lack of participation by special needs parents on school PTSA boards. Um, excuse me. Not only does our child with disabilities – and the rest of our family – require our time, but according to our life goals, the PTSA book sale may just not come up on top. Great if it does! PTSA is an excellent organization with good goals. But if it’s not a personal priority, we don’t need to feel obliged to make excuses.

We do not need to feel guilty saying “no.”

7. We learn to embrace our slow pace. I’ve told you earlier about my wise mentor, Vicki. Once when I complained to Vicki about how long it took to get through the basic routines of our day as I struggled with all my daughter’s “baggage,” she gave me a lovely piece of advice.

“Rose-Marie,” she said, “being forced to slow down is a gift. When you have to move through life slowly you will learn to see things you would have raced past before. Having to slow down allows you to savor life.”

Don’t you love her?

Several years later, Vicki’s daughter died unexpectedly. In one of our conversations when I asked how she was coping, Vicki said, “Something awful is happening. I am starting to hurry again like the rest of the world. I am forgetting how to live slowly...and it is terrible.”

There are days I struggle to remember that my slow pace of life is a gift. And Vicki is right. We may not accomplish as much in a day as our neighbors, but we have seen the small miracles.

We have given our children comfort and assurance. We have tangibly demonstrated love by our patience in accommodating their needs. Our actions show our children that they are precious to us. We have time to delight in these remarkable young people.

The hurry in life doesn’t matter; it doesn’t leave anything to show for itself but stress and gray hair and speeding tickets.

While I'm excited for what awaits on the other side, I’m in no race to get to the end of life. I might as well enjoy the scenery along the way. My child is teaching me this gift.

How about you? What advice can you share about living days where not all 24 hours are left up to your plans?

Knowing When to Back Off

Barbara at TherExtras asked us to participate in a blog carnival on the topic of recognizing readiness. It’s a happy and forward-looking topic. You are invited to take a look at my response here.

Some disorders that include loss or regression find us struggling to accept when our kids are not ready to move forward. In fact, they may be losing ground. It’s a difficult thing, but it’s important to acknowledge honestly.

How do we know when it's time to keep “pushing” forward and when it’s time to back off? Pull up a cup of coffee and let’s work through this.

Please allow me to share a little background.

A seasoned special needs parent shared a platitude shortly after our daughter was diagnosed with Rett syndrome. No doubt it was offered with the best of intentions. But I took it much too literally and ended up taking on tremendous guilt and self-depreciation. Back then, without the perspective of time or experience, how was I to know to question this “wisdom?”

That awful cliché was this: “Use it or lose it.”

By association, you can also conclude that if your child does lose a skill, it must be because you didn’t push your child hard enough to continue using it. Any loss she suffers, then, is obviously all your fault. At least, I made that connection.

Wrong direction to push an already wounded parent.

Rett syndrome is not the only disorder to cause skill loss or regression. There are others. But it’s the one I’m personally familiar with, and so that is the perspective I speak from.

In Rett syndrome, toddlerhood is an age in which loss of skills is the hallmark symptom of the disorder. These losses simply are. They are not within the child's control.

Like any parent crazy with grief and fear about the outcome of the diagnosis, of course I pushed my child harder than I ought, to do more than she was capable of doing. I certainly didn’t need trite platitudes haunting my every waking moment and robbing my sleep at night.

How much better all our lives would have been during that difficult period if someone had gently taken my hand and said, “Do your very best to help her keep all she can. That which she cannot keep, let go.”

So how do we do that? How do we know when to do our best to encourage her to move on? How do we know when to let go?

Our kids are our best leaders in this. We need to listen and to trust them. They are the ones living inside their skin, knowing when something is too overwhelming or frightening or painful. Toddlers may not have the best judgment at ALL times (for instance, the toddler who tearfully refuses a nap is probably the toddler who needs one the most), but we need to trust their perceptions of their abilities. Especially when their responses are consistent over time.

The most poignant story from our experience discredited the “Use It or Lose It” theory and eventually taught me to trust my daughter’s lead.

I was terrified watching her losing her ability to eat by mouth. She had been a great little eater up until her first birthday, picking up Cheerios or green beans with the finest pincer grip. She nibbled on grilled cheese sandwiches cut into long “fingers.” Homebaked chicken nuggets were an easy favorite protein. She had even begun feeding herself using a spoon.

Slowly, her ability to chew began to deteriorate. I found myself cutting her bites smaller and smaller. Large bites merely got mashed into globs that she struggled to swallow. It alarmed us that her eating skills were getting worse.

She stopped using her spoon and threw it instead. I also noticed that her amazing pincer grip, the one that allowed her to pick up dust particles from the floor, had regressed into palming. She’d try to shove fistfuls of food at her mouth and sometimes missed completely. She was hungry and acting out in frustration. I interpreted this as being naughty.

Enter her diagnosis:  Rett syndrome. I was terrified reading about the losses she might experience. When that older, more experienced mom cited the “Use It or Lose It” theory, I thought that maybe, if I worked hard enough to keep her using what she still had, she wouldn’t lose anything more.

I pushed. Five hours a day I pushed her to eat. We devoted one day a week to oral motor therapy and the lengthy drive to get there. I pushed her when her reflux told her to stop eating. I pushed her when she felt threatened by swallowing. I pushed and she cried. We both cried. No amount of forcing her to “use it” was keeping her from losing her chewing and swallowing.

After a year of pushing, a swallow study revealed why she resisted eating. She had been aspirating the bites I forced her to eat. The medical test explained what she did not have words to tell me.

Can you spell g-u-i-l-t?

How must I have made her feel, cheering her and pressuring her to do something she physically could not coordinate?

That test told us it was time to back off. She was no longer ready to eat by mouth. She had known all along, and she was trying to tell me. I hadn’t listened to her. While listening is certainly the first and best step, medical tests can also provide helpful information to let us know when it may be time to back off.

Medical tests can confirm bone or joint issues that cause a child to suddenly stop walking. They might confirm an illness that causes a child to stop swallowing food or saliva. They may confirm an inner ear infection that causes dizziness, impacting a child’s gross motor skill. Before we jump to panic mode over difficulties with a skill, we need to explore the possible medical explanations.

To be fair, when kids can’t use a skill because they are sick and bedridden, it can take a tremendous amount of work to recover a dormant skill. But we don’t need to immediately panic that the skill is permanently lost. There is a possibility it may be gone. But it may just as well be waiting to return.

While our daughter has yet to walk independently, she has come seriously close about four times in her life. Each of those periods of progress were interrupted by setbacks, whether illness or seizure. Those setbacks did not stop her from trying hard to regain her previous level of skill.

Many families can share similar stories.

Generally, especially for seasoned parents, there’s a lot to be said about trusting your intuition. Deep in your heart of hearts, you probably know if it is reasonable to push your child to practice a skill or not.

In the case of my daughter’s loss of oral motor skills, my intuition was no help at all. At other times, such as continuing to look for sparks of readiness for independent steps, my heart said to keep right on encouraging her to keep trying. Right now my heart does not say that; she battles issues that prevent her from being ready right now…but maybe down the road she will be ready again.

And that is the place of hope where I’d like to wind things up. We may not see readiness for a new skill today. In fact, it may be time to put a frustrating skill to rest. At least for awhile. Because maybe, with prayer and faith and hope, there may come a day when that readiness again raises its little head.

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We prepare the conditions. We ready the opportunities. We pray. We wait. Just as faithfully as the crocuses push their way out from below the soil in the spring, readiness for that skill may re-emerge.

But pressuring, fussing, forcing will not make the crocus bloom. Neither will this ready the soil for that tender skill.

Is your coffee cup is empty now? Mine is. I hope this has helped. It has helped me tremendously. Thanks for sharing this time. I appreciate it. “Do your very best to help her keep all she can. That which she cannot keep, let go.”

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Be sure to check out Barbara's blog carnival at TherExtras!

You might also want to read 3 Signs Your Child is Ready to Tackle a New Skill

3 Signs Your Child is Ready to Tackle a New Skill

How do we know when our kids are ready to move on to a new skill?

Since I deal daily with Rett syndrome, a land of ever-shifting terrain, this question is close to home. Rett syndrome, along with so many other disorders with a neurological component, presents an ongoing ebb and flow of skill gains. And skill losses. But for today, let’s look at how our family has recognized that our daughter was ready for greater challenges. The cues she gave weren’t always the standard ones we look for in typically developing kids.

1) Increased interest in new areas. Sure, this sounds pretty typical. But we have to look past the situation at hand to see the broader implications of readiness.

For example, our girl was a diehard Wiggles fan. The bright colors, the catchy songs, the silly humor, the MEN were all attention grabbers for her.

But when she began to show interest in documentaries about penguins, she indicated readiness to take in information in new ways. We could see that she no longer needed the multisensory input of bright colors or music or MEN to keep her interest. She showed us that her attention span exceeded the 60-second vignettes that made up the Wiggles show.

She was ready to enter a new world of information input, one which was supported by the general education classroom and age-appropriate learning venues. Even if it meant being taught by a woman.

Might I add this was a joyful time at our house? While my husband and I are indebted to all the Wiggles men and their Big Red Car for the smiles they brought our girl, Henry the Octopus was enough to make me hurl. We were not sad to see Henry or Dorothy the Dinosaur exit from our lives.

2) Boredom. Particularly for kids confined to wheelchairs, boredom is often expressed as shut-down. Sleep. Faking sleep. They escape from a boring situation by checking out.

The other option for them is tantruming. Screaming. Doing anything loud or aggressive that will get them removed from a horribly boring situation.

I suspect the route a child chooses has much to do with personality. Our daughter shuts down when she is bored.

When a child is bored, they are ready to move on. They may not have mastered a skill in its entirety, but they may be ready to generalize it to new situations.

Take, for example, an occupational therapy activity that was suggested to us. We were to assist my daughter, with as minimal assistance as possible, to scoop a walnut out of a bowl, carry it in her right hand across midline, and drop it into a second bowl. Repeat for 30 walnuts. Switch bowls and repeat for the left hand. Ho-hum (I see you yawning!).

After the second or third time I brought out the bowls of walnuts, the poor child would drop her head to her chest and fake sleep. Had she mastered the skill? Absolutely not. But she was ready to apply it to something else that would keep her brain engaged.

So we started sorting plastic letters into piles of capitals and lower case, using the same movements of scooping, crossing midline, and releasing. We did the same to separate consonants and vowels. She never did learn to love the activity, but at least she was able to stay more engaged in it when we brought it into a learning realm she was ready for.

3) Stagnating IEP objectives. This is a huge problem for children who have difficulty expressing themselves. I have seen it not only with my own daughter, but many, many other kids with complex issues. An example is the IEP with the goal for identifying colors (red, yellow, blue, green) from preschool until high school. Unbelievably, this happens in real life. No joke.

When an IEP goal is repeated several years in a row, the child is ready to move on! There are several scenarios that may be at work; each one suggests that the child is ready for new goals.

a. The child has mastered the goal. Move on. So what if the concept is easy and comfortable to teach? The child deserves to be challenged. Move on.

b. The child has internally mastered the goal and either cannot express it or, more likely, HAS expressed it but we’ve missed the responses. Move on.

c. The child hasn’t mastered the goal. Move on. It may not be intrinsically important to the child. It may be that our system for teaching that goal has been inappropriate. It may not be broken down to fit the child’s capability. There are many other reasons a child may not master a goal. But why waste their time doing the same thing that hasn’t worked in the past? Move on.

Granted, there are some situations where maintaining a skill is the objective. We see this with our daughter and physical skills; just keeping what she has is forward progress. I don’t see these as “stagnant” goals. Ideally, her continued goal to “walk 300 feet with assistance” would include fading of the levels of assistance, but for now, just walking 300 feet with as much assistance as she needs would count huge in my book as progress.

4) Bonus:  They just do it! This is the miracle of child development when it happens. While it’s not unusual for typically developing kids to spurt forward without much warning, sometimes our kids with disabilities will also magically sweep us off our feet. Suddenly, everything comes together. It may be out of the blue or it may come after months and months of rehearsal. Maybe they go from standing to propelling forward with steps (don’t pinch me if this ever happens. So far, it has only occurred for my daughter during my REM sleep). Maybe they invite a classmate to join them in play for the first time. Maybe, FINALLY, they reach out to touch fingerpaint after years of tantruming over balking at all tactile sensations.

One instance that has happily etched itself forever in my memory was when the consonant “m” came together for our daughter after she’d lost her ability to speak. Her sister, then a toddler, had been rehearsing a nursery rhyme by filling in the word “moon.”

“I see the ____ and the _____ sees me,

God bless the ______ and God bless ME!”

Little sister was reciting the rhyme for Grandma, filling in with the word “moon” (and “me!”) at the correct pause. Our non-verbal daughter started to get agitated, so Grandma asked her if SHE wanted to recite the poem. Happy smiles; that’s an affirmative, Captain.

Oh great, I thought. She’s going to be so disappointed when the word doesn’t come out.

BUT IT DID! Well, close.

“I see the MMMmmmmm,” she fills in, right on cue. Timing is another part of our daughter’s apraxia that is impossible for her to control. BUT SHE DID IT!

“…and the MMMmmmm sees me.

God bless the MMMmmmm and God bless MMMmmm!”

Grandma and I could hardly see her for the tears puddling in our eyes, but the look of pride on her face was priceless! Everything just WORKED!! This so rarely happens for her, but when it does, it is a monumental occasion. And I’m happy to report that “mmmm” continues to be a consonant sound she has been able to maintain, especially because it makes up the bulk of that most important word—mom. What mother could ask for anything more?

Barbara at TherExtras has launched a blog carnival to discuss the topic of readiness. I hope you will check out her post and join in the fun!

When Your Plate Gets Too Full

In the USA, we celebrate Thanksgiving each Nov. 25^th with an enormous meal. I’m sure every country has similar celebrations that involve heaps of food. Everyone reading, then, can probably relate to plates overfilled with delicious holiday fare.

We pile more enticing goodies onto our plates than any single human could possibly eat over three days (make that four days if my mom brings her Ambrosia salad). It’s no wonder we can’t eat all the food on our plates! There is simply too much.

But then Grandma comes out of the kitchen with her delectable warm apple pie and homemade vanilla ice cream and...oooo, yum!... We can’t say no (been waiting for this treat all year!). Oh no, we find a way to squeeze in a least a few bites of sheer bliss before we keel over in a euphoric state of overindulgence.

Parents have a tendency to heap more on our life’s “plate” than we can effectively manage. Unfortunately, this doesn’t end up in such a pleasant form of keeling over. It ends up in stress, poor health, damaged relationships, and a host of other nasties.

Much of what we heap on is by choice:  our careers, our homes, our church attendance, our hobbies and recreational activities, our pets, personal wellness, the extracurricular activities of our children, our fitness goals…the list is endless.

Some of what we deal with when our children have special needs is not what we would have chosen to add to the plate, but it is necessary for our kids’ well being:  medical routines, caregiving responsibilities, doctor and therapy appointments, IFSP/IEP/ISP meetings (don't you just love all that jargon?), 438 million phone calls to organize all these activities. Another endless list.

And then enters a plateful of “dessert” that we simply can’t walk away from—a crisis, an illness, some other unexpected circumstance that demands our immediate attention.

There are times all of this gets to be just too much. As difficult as it is, we must cope with our overfilled plates. Just how do we do that?

One way is to say no to anything that isn’t critical. If the candied yams with marshmallows aren’t your favorite side dish, pass them up for another that is.

You might decide that television viewing is a time luxury that you can’t afford. You might choose not to own pets (shhhh, don’t let our critters hear that one). You might limit the number of clubs and extracurricular activities that vie for your time. You might forego Twitter and Facebook.

Is there something you are doing right now that isn’t really necessary? If you stopped doing it, even temporarily during crisis, would your world really fall apart?

Another way is to scale back your portions. Take fewer bites of the things that matter. Maybe your hobby is what allows you to keep your sanity, but it may be necessary to cut down the amount of time you allow yourself to sew or sail or spelunk.

Scaling back is sometimes much more palatable than eliminating an activity all together.

Maybe your church’s home group is enough and all the extra women’s activities beyond that could be put on hold. Instead of visiting the library weekly, maybe a visit every other week is adequate.

What do you need to do or enjoy doing that you could do a little less of and still meet the need?

Streamlining your activities might be more of a cooking secret as we prepare that Thanksgiving feast than how we eat it, but it applies to managing all we have on our plate.

It’s become almost a game to me to figure out ways to save time or steps in my caregiving tasks. I save minutes by blending up a whole day’s batch of food for my daughter’s tube feedings instead of making single meals. By storing all her medications and tube feeding supplies in one cupboard, I save many steps in medication and meal prep. I use a quick checklist to send with my daughter to school each morning that takes only a couple minutes to complete and saves hours of phone calls later to clear up confusion.

Are there frequent tasks related to your child’s care that can be streamlined to save you time? Ask your friends who face similar issues how they approach the same task and learn from them (this strategy has helped me tremendously!).

Share what’s on your plate if you can. If you can’t eat it all, maybe someone else is willing to take several bites for you.

If you are fortunate enough to be able to afford to pay someone else to do some of your work, then hire it out. Maybe you would be better off hiring someone a few hours a week to do your housework or mow the lawn.

Maybe you can trade tasks with another family. Swapping babysitting is a tough one where we live, but I hear from other moms that it can work well.

And be sure to ask. When a friend or relative asks what she can do to help, let her. Maybe she could drop off a package at the post office you’ve been meaning to mail.

Instead of trying to do it all yourself, what could you pass along to someone else? What creative arrangements might you design to make this possible?

And then, give up the guilt over what you cannot finish. No one expects you to clean your plate on Thanksgiving. No one expects you to “do it all” in life. If you expect that of yourself, you’re being a harder on you than you need to be.

Are you beating yourself up for the things you can’t get done? If so, give yourself permission to stop. Guilt isn’t going to get you anywhere.

Special needs parents have a lot piled on our plates that we didn’t ask for and that may not be favorite dishes. But this is our reality and we do have to deal with them. We have control over many of the other things we add to that plate, and we can:

chose to eliminate some,

cut back on others,

streamline our routine tasks,

enlist the help of others,

and above all, let go of guilty feelings when we can’t get all of it done.

Crystal Paine at MoneySavingMom.com has a free ebook on time management that is the single best book I have ever read on the subject of managing your time (and I’m desperately disorganized, so I’ve read shelves full!). If you need help figuring out how to deal with an overfilled plate, I recommend it highly. It’s a fairly short book written from a Christian perspective and worth digesting s-l-o-w-l-y to get the most benefit. You can download it here.

This weekend our house was hit with a stomach bug. It’s a great time for me to re-read Crystal’s excellent book and get my priorities in order for the extra heap of helpings on my plate right now. I hope you will download your own copy and join me in managing our full plates!

Here's to a lighter plateload for us all in the week ahead!

Photo credits go to purpleslog and Emily C. at flickr.com